Pediatrician Appointment

Yesterday I had my long day at the hospital for my prenatal appointment and the appointment with the pediatrician. I was out of the house by 8:30 to get to the hospital by 9:30 - then my tedious prenatal appointment took until 11:30, during which time I actually saw a doctor for maybe 5-10 minutes. The rest of the time was just waiting for the slow cogs of the public health system to turn ;) I did manage to persuade the doctor though that I didn't "need" to come back in 2 weeks for another prenatal check up and would prefer to come back in 3 weeks (when I'll be 39 weeks pregnant) instead so at least I don't have to go through that so soon. When I was pregnant with Lana, I did these prenatal check ups at the Maternal Health Clinic 2 minutes from my house - and things there seemed to happen a bit faster as well. But because this is a more complicated pregnancy, I must go to the hospital instead. Although I don't really understand why because all the complications are with the baby, not with me.

Fortunately for me (not so for her), a friend of mine who lives 5 minutes from the hospital broke her foot a couple of weeks ago so she was off work - so at least I could go visit her and have lunch with her in between 11:30 and 2 when my pediatrician's appointment was scheduled.

At 2 I was back at the hospital for my next appointment - and I actually had to go and get admitted to the hospital for that appointment, although I never got given a bed or even got to wear that wrist bracelet they print up - I was actually only there for an hour. 

It was really good to be able to meet with the pediatrician and talk with him about his expectations of what would happen after the birth of our baby. When she is born, the most immediate concern will be her breathing. Her ribs are still slightly restricted but it's impossible to tell before birth exactly how well she will be able to breath. If when she is born, her breathing is very affected, she will need to be immediately rushed to the NICU and we won't have any time with her in the delivery room. She may need to be intubated or put on oxygen to help with her breathing. However if her breathing is pretty stable, she will be allowed to stay with us in the delivery room for about an hour or so, during which time we can try to breastfeed or just cuddle and get used to each other a bit. Obviously we're hoping that her breathing is stable at birth! 

Regardless of whether or not her breathing is stable though, she will need to spend probably at least 1-2 days in NICU/special care for observation and tests. The pediatric team will be looking after her most of the time but she will also have an orthopedist (bone doctor) who will do a lot of the x rays etc. Her feet are still appearing to be mildly clubbed so most probably pretty much from birth, she will need to have her feet splinted/put in casts to try and mould the feet back into a better position. This is usually done pretty soon after birth because the tendons and muscles are more relaxed then and can be manipulated easier.

The good thing is that the pediatrician does expect for her to be relatively stable and he expects that she most probably will only need to be in the hospital for less than a week. Of course all that depends on her condition when she is born - but it's still a nicer alternative than what we heard earlier in the pregnancy. Then the doctors couldn't even assure us that we would be bringing her home at all.

From the ultrasound, the doctor estimated her weight to be around 2.2kg or 4.8lb - which is still on the small side (average for 36 weeks is 2.6kg/5.8lb). I don't put too much trust in the accuracy of weight measured by ultrasound though - particularly in situations like this where the baby is not proportioned the same as an average baby. But hopefully she puts on a bit more weight before she is born - because generally speaking, larger babies at birth are healthier. I know that NICU often has "target weights" at which they will release a baby - and if a baby is small, even if everything else is looking ok, they will sometimes keep the baby in for a bit longer until they reach their "target weight".

I asked the pediatrician how often they had cases like this at their hospital. The hospital that I am going to is the one hospital in Hong Kong that has a great NICU and also specialises in high risk pregnancies, and the private hospitals would not accept cases as complicated as this - so pretty much, this hospital is where 90+% of these kinds of cases in Hong Kong would end up. The pediatrician said that they have milder cases of this kind of thing maybe 1-2 times a year (maybe something like Achondroplasia, the most common form of dwarfism) - but in our case, the limb shortening is much more severe. I think that this is a once in a few years (or even less than that) kind of situation for them. We're somewhat celebrities over there and a lot of our doctors appointments will have all kinds of interns at them, because it is not often that they have the chance to learn about this kind of situation.

This was our last appointment for an ultrasound, and our last appointment with the prenatal diagnostic clinic. Everything else now is just "wait and see when the baby is born". I'm 36 weeks today and have another 4 weeks until my due date. Lana came 4 days early and I'm really hoping that this one comes a bit early too. Maybe she can come on the date of my next prenatal appointment so I don't need to go to that ;)

A few prayer points for the last couple of weeks:

• Please pray that when our daughter is born, that her breathing will be stable and that she won't be in any immediate danger. Pray that she surprises the doctors by how healthy she is and is able to leave the NICU quickly
• Please continue to pray that she doesn't have a cleft palate - it's one complication that I'd rather not deal with. It would make breastfeeding (and feeding in general) so much easier if we don't need to worry about that - and it will mean one less surgery down the road
• Please pray for me - I am preparing myself that I almost definitely will need to be separated from her at birth. I know that medically, it is in her best interest but that doesn't necessarily make it easier for me. I'm not looking forward to that. I'll be separated from BOTH my girls and I'm not looking forward to being separated from Lana either.

I'm really glad that this pregnancy is coming to an end - it has been a long, hard, emotional pregnancy and I'm ready for our little one to be here. I want to start our life together as a family of four :) Even so, little one, come quickly :)

Pediatrician Appointment scheduled

I got a call today from one of the nurses at the hospital where we're delivering the baby - they have scheduled an appointment with the pediatrician so that he can see the baby (on ultrasound) before she's born and they can be prepared for her birth, as well as us having a greater knowledge of what is likely to happen after she is born as well. The appointment is scheduled for next Tuesday - the 29th. 

Unlike the geneticist who will be involved in finding and confirming a diagnosis for our daughter, the pediatrician will be involved in her care immediately from birth. If she has do go to NICU (something that our obgyn said was almost definite), he will be the one supervising her care for her first few days. He probably will also be the one who will be ordering the x rays and blood tests that she will need.

I'm looking forward to being able to prepare ourselves for what is likely to happen once she is born. When Lana was born, she needed to go to Special Care for observation for about 12 hours or so and I was completely unprepared for it and found it extremely difficult as a new, first time mum. Everything happened so fast that I wasn't really able to ask questions and really understand what was going on at the time - and I was still recovering from the childbirth as well (AND it was past midnight by that time) so I was encouraged to go to my ward and sleep while my newborn was placed on a different floor to me.

I think that with Lana's situation, if I had been able to know about it in advance, it wouldn't have been as hard on me as it was. So I'm really grateful that I will be able to talk with the pediatrician (and not just the nursing staff who often convey messages between the patients and the doctors) and get a better idea of what to expect once our little one gets here :)

The annoying thing is though - on Tuesday, I've got a prenatal appointment at the hospital at 9:30am, then I've got this appointment there at 2pm. The hospital is quite far from my house - it takes an hour to get there by public transport - so there's not really any point in coming back home. So I'm going to be at the hospital pretty much the entire day - something I'm not looking forward to! But I guess it's good practice for when the baby is born...

5 weeks today til my due date!

32 week ultrasound

Today I had another ultrasound. I'm currently 32 weeks 6 days (practically 33 weeks). There's no real new news or anything like that - it's much the same as previous ultrasounds. The head/body/internal organs all appear normal, average size etc. The limbs are now all 10 weeks behind - measuring at 22-23 weeks. I'm thankful that I'm this far along and I haven't developed any other complications. My umbilical fluid levels are normal and I'm healthy as a horse - I feel much more fit than I did when I was pregnant with Lana. I have a bit more back pain but I think that's because I've been carrying Lana around a lot this time. When I was pregnant with Lana I had the worst foot/leg cramps - but I haven't really had very many of them this time around thankfully!! Thanks to the pilates I've been doing with my physiotherapist since Lana was about 6 months old, my posture is much better and I feel stronger. Things are coming along and the end is in sight.

The doctor today suggested having an appointment with the pediatrician so that he will be able to "see" the baby before she is born and that way, he is a bit more prepared and I am also a bit more prepared. The doctor said that the baby will most likely need to go to NICU - even if it's just for observation for a while. I kind of expected that. I know this hospital tends to be very cautious, one thing that frustrated me about them when Lana was born (she was put into Special Care for observation when she was first born since she was born 40 hours after my waters broke and I wasn't emotionally prepared to be separated from my newborn. In the end, she was only there for maybe 12 hours and she was perfectly fine anyway). I do think it will be beneficial though to talk with the pediatrician though and to have a bit more of an understanding as to what to expect after she's born. I don't know yet when that appointment will be - they will call to schedule it.

In the mean time, I'm down to biweekly prenatal visits at the moment (so annoying - they take so long in the public system and like I said, I'm healthy as a horse so there's not much that they say anyway), and my next ultrasound is scheduled for the beginning of July. I think I'll be 36-37 weeks then... I can't wait for this little one to get here! It's been such a long pregnancy...

Geneticist Appointment

Today we had our appointment with the geneticist - and it went much as expected really.

The geneticist agreed with my "guess" that it looked most like Diastrophic Dysplasia - and that would be his first suspicion. However we won't be able to know for sure until after the baby is born.

When the baby is born, the first thing that they will do in order to get a diagnosis is to fully examine the baby. Then they will take x-rays of her entire body. This should be able to get us a fairly good idea of whether or not it is DD or if it is something else. They will also collect some of the cord blood (so they don't need to take the blood from the newborn) to do the genetic tests which will say whether or not she has the gene mutations that are indicative of DD. These tests will take up to 6 months to give us a definite answer. 

Diastrophic Dysplasia is usually inherited - which means that both the mother and father are usually carriers. So if we do get a positive diagnosis for this condition, Bernard and I will also need to have genetic testing done to see whether we are carriers (if the baby has it though, it's generally pretty probable that both parents are carriers - although there are exceptions to that rule). If we both are carriers, the chances of a future child also having the same genetic disease are 1 in 4. This may affect our future plans to have more children (we'd like more), but we haven't really talked about that yet. We'll cross that bridge if/when we get to it. 

The good thing is that there are no obvious fractures on any of the bones (we went over all the limbs and all the ribs), and they appear to be well ossified (hard rather than soft/brittle). This suggests that it may not be Osteogenesis Imperfecta (where the bones are brittle and break easily) and I think I should be able to have a natural birth and shouldn't need a caesarean. Particularly now that the little one is head down!

The other good thing is that the geneticist agrees that it appears to be non-lethal - although we're not completely in the clear yet, but I'm happy with the news regardless. This news means that we aren't going to be planning a funeral just now :)

The visit with the doctor today gave me a bit more confidence in the medical system here in Hong Kong. The doctor who we saw (and will see again after the bub is born) was very knowledgeable about these issues - he's really the first doctor who could answer all of my questions satisfactorily.

So we're still really in the "wait and see" mode - but I do feel quite confident that probably we are looking at DD. It was the first thing that "fit" when I was trying to diagnose it myself  way back here in February - and to have a doctor's opinion confirming that's probably the most reasonable option (although not the only option) makes me think most probably, that will be the diagnosis. I've already done quite a bit of research and I'm planning on doing more. I know that there's still a chance that it's not DD but a bit of research never hurt anyone - and I want to be as prepared as possible to be the best mother I can be for our little girl :)

"Probably non-lethal"

Today, we went back to the public hospital for another scan. I'm now 28 weeks and the last scan was 4 weeks ago. We got to the scan and found out that our previous doctor has moved to a different hospital so we had a new doctor who didn't know anything about our case - although she had obviously read our file in advance. After a small amount of apprehension, my mind was put to ease when I found that she was by far the best doctor we've seen since our regular obgyn (who is also great) transferred us to someone else since this was "outside his area of expertise". I googled her once I got home and found that she's actually the department head for the Prenatal Diagnostic group, so no wonder she's so good :) She was both caring, but still forthcoming about her medical opinion about our baby. 

At the beginning of the scan, we started by just talking about the situation, about what I specifically wanted to look for, about what a possible diagnosis was. She was very attentive and she acknowledged that we had done a lot of research about the situation!! 

So here are the results from our scan this time. Again, being in the public hospital, we didn't get pictures to bring home so I've got nothing to show, I'll just explain the situation.

Limbs: the limbs are all still behind, now all the bones are 7-8 weeks behind. Some of the bones do not appear to be straight, but they don't appear to have been fractured or anything like that which is good news. I want to be able to rule out a condition called "Osteogenesis Imperfecta" or brittle bone disease because if the baby has this condition, a vaginal delivery could potentially be harmful for her. The doctor said that she does not think that it is the most severe form of OI, but she could not rule it out completely at the moment.

Head size is normal, body size is normal, no problems with any of the internal organs, no fluid on the brain, nothing to worry about there. 

Rib to abdomen ratio: this is the measurement I've been keeping my eye on the most - and it's better today! Up to 0.8 which is in the "normal" range! This means that the lungs do have quite a bit of room to grow and show be able to function normally once the baby is born. 

At the end of the scan, I asked the doctor what she thought some of the likely causes might be, and she said that it was probably not Achondroplasia (the most common form of non-lethal dwarfism - I already suspected that though) but she did say the words I've been waiting for hear a doctor say for the past 3-4 months now - she said "It's probably non-lethal"!! 

I was so happy to hear that.  I mean since the beginning of this journey, when I researched these issues, it really seemed to me like medically, it was most likely non-lethal - and even when our previous doctor told me that he was leaning towards a lethal diagnosis, I didn't really believe that he was right. But it's so reassuring to hear a medical doctor look at our scans and come to that conclusion for herself!

I asked the doctor whether she thought it would be beneficial to meet with a dwarfism specialist/geneticist before the baby is born, and she is now going to set up an appointment for me with him. He should be able to provide us with more information about a specific diagnosis and also what to expect after the baby is born. Hopefully we'll be able to see him soon.

This visit today has really raised my hopes - not only of the situation of our child, but also of the medical system here in Hong Kong. I'm looking forward to being able to talk with the geneticist about it and getting his opinion on it as well, and I'm looking forward to once this bub is born and being able to settling in at home with her. I know it's still a long road but I'm so relieved that most likely, we will be able to bring our little one home.

The things doctors say...

I had a prenatal check up last week. It was just a check up for me, no ultrasound or anything like that. Because I'm going to a hospital which is the largest teaching hospital in Hong Kong, I had some student doctors in the process. It's possible to say that you don't want student doctors but I figure, they've gotta learn with someone as the patient - might as well be me! (as long as they're not cutting me open or anything like that!). One student doctor was going over my medical history with me, as a kind of "pre-consulatation". She consulted with me, then wrote down a bunch of information and then reported back to the doctor I was about to see. She was remarkably sensitive and a couple of times, when she saw I had a tear in my eye, she passed me a tissue and said "I'm sorry if my questions are causing you any pain". 

Fast forward half an hour and I had a consultation with the doctor. You would expect the doctor to be more experienced, more sensitive, more knowledgeable about the issues surrounding these kinds of pregnancies. And as a doctor, she wasn't a bad doctor - but one question she asked me completely floored me. She asked "So, you want to see your baby grow up?"

Seriously now - what kind of a question is that? And what kind of an answer am I meant to give to such a question? "No, I don't want to see her grow up" - duh. I think she was trying to ask in a different way "So, you have decided against termination?" but in a softer kind of a way but the way she worded it was completely wrong. 

In another situation, today I had to take Lana for her 18 month immunisations (a couple of weeks late, but she was sick when we were meant to do them). I quite like our family doctor. She is close to us, she is great with kids, she's pretty easy to get in to see, she's not ridiculously overpriced like most of the doctors that expats in Hong Kong see. We found her from our insurance company and when we see her, we just need to swipe our insurance card and don't need to pay anything for the consultation or for any medication that we need. I've only had one time in the past that I haven't been happy with her and that was when Lana was 10 months old and I was having breastfeeding issues. I found her to be not very knowledgeable about breastfeeding and felt like she gave me wrong medical advice in that situation. I do forgive her for it though because I understand that breastfeeding is not very popular in Hong Kong culture and so most doctors over here (apart from the expensive expat doctors) aren't that supportive or knowledgeable about it.

I thought that I would mention the issues we were having in this pregnancy just to a) prepare/inform her about it, and b) ask whether she had any experience in something so rare. I mentioned that this baby was diagnosed with skeletal dysplasia at 17 weeks and what was her first response? "And they let you continue with the pregnancy?"

Well first of all, no one can force you to terminate, no matter what the situation is. Maybe if I was unconscious and they couldn't get in touch with my family and it was either take the baby or else the baby and I would definitely die, maybe then they would be able to act without consent - but apart from those extreme situations, termination is always the choice of the parents, not the choice of the doctors. And secondly, there is currently no medical reason to believe that our child will not be able to live til she is 80 and have a normal life. Sure that chances are lower, and the other medical issues are greater. But there's nothing saying that she definitely will NOT be able to do that.

I am very aware that our decision is not the "normal decision" in this culture and this situation. I haven't asked the doctor specifically (I may do that at our next ultrasound) but I would guess that the vast majority of people here in Hong Kong would have made the decision to terminate is they were in our situation. You can read my thoughts about that here.

I guess I need to expect that people will not know how to respond to our different decision, even doctors obviously do not know how to respond to it. I wish though that there was a course that doctors had to take called "What not to say" or "How to be sensitive to your patients difficult situations" - it seems that quite a few doctors are unaware of these things. 

The first doctor with the public hospital, I probably will never see her again since every time I have a prenatal check up, I see a different doctor (although I do have one doctor who does all the ultrasounds, but he only checks on the baby - not on my blood pressure and weight and whether or not I have protein or sugar in my urine). With our family doctor, I'm not going to stop seeing her based on her insensitivity in this situation. I will even bring our daughter to her once she's born and hopefully she'll be open to learning more about our daughter's condition because despite the difference in culture, I do think she's a good doctor.

Half way through a marathon

I have never run a marathon and I am quite sure that I never will run one either. But I imagine that there are probably three different stages to such a long race. I could be wrong because I have no experience, this is just how I think about what it probably would be like.

In the beginning, there's probably a whole lot of sorting going on as people want to be placed in a spot that is ideal for them. Some want to be in that front pack, others are content to be not right up the front but will conserve their energy for later in the race. But I imagine that at the beginning of the race, a lot is going on as the contestants sort themselves into groups. In the middle of the race, I imagine that it's pretty much just trying to keep on going, maintaining the position that was gained at the beginning of the race, and at the end, I guess that's when the contestants really make their move, breaking away from the packs and trying to get into first place rather than just being content to be in the first group of people.

It seems to me like in these distance races, most of the hard work is done at the beginning and at the end of the race, with the middle being mostly about maintenance. And that's how I'm feeling about my pregnancy journey at the moment.

I'm currently right at the beginning of the third trimester with another three months before the due date. And it was right on three months ago that we first found out that there could be issues with the pregnancy. 

I feel like we have already gone through the process of dealing with the initial diagnosis, preparing ourselves somewhat for those possibilities... the news no longer scares me as much as it did initially, the shock has worn off and I am pretty used to it. We have answered hard questions and thought through difficult scenarios, and I do feel quite content with where we are in this journey. But I know that towards the end of the pregnancy, there will probably be more obstacles to deal with, more trials to go through, more things to process. 

I know that the end of the pregnancy will not be the end of this story - but it will be the end of my pregnancy journey and the beginning of a new journey.

So for now, we're in the middle of this marathon - holding onto the place that we got to earlier in the pregnancy and waiting for that finish line and the other issues that we will need to deal with as it gets closer.

Doctor's appointment - 24 weeks

We had another ultrasound today, and no real new news there. The baby is growing, getting bigger, but things are still pretty much the same as they were at our last ultrasound a few weeks ago. 

The doctor was really rushed today so our appointment was significantly shorter than last time (which was fine by me, I wasn't feeling up to laying on that hard public-hospital bed for an hour and a half while three different people of increasing seniority did the same scan over and over) - but we also didn't really get as much detailed information. We did get to see her face in 3D again and she still looks like Lana to me :) We didn't  get to keep the picture though so I can't post it here.

The head and body are still average size and everything looks fine there - no problems with any of the internal organs. No hydrocephalus (fluid on the brain) or anything like that. She's currently head up so hopefully she can find some incentive to turn in the next 16 weeks. Like I mentioned in a previous post, sometimes SD babies have a harder time getting into the right position for labour and are breech, needing to be delivered by C-section.

All the long bones (arms and legs) are currently measuring at 18 weeks, or 6 weeks behind. The kidneys are still slightly swollen but the doctor said it wasn't really an issue. The main bit of information that I was wanting was the chest to abdomen ratio - normal is 0.8-1, and lethal dysplasias can be around 0.5 - our bub currently has a ratio of 0.75 - so not TOO bad there, closer to "normal" than to "lethal", and 2% better than our last scan. I said to Bernard after the appointment, if it keeps increasing by 2% each time, maybe we can get up to 0.8 by the time that the bub is born ;) 

My next ultrasound will be in a month, unless I schedule an appointment with a private doctor before then. I may try to do that, or I may wait til 30 weeks. I don't know if there's much benefit in seeing another doctor who will tell me exactly the same thing. Although it would be nice to go to a doctor who will give me pictures of the bub at least ;)

The baby is getting stronger and kicking more, and harder, all the time. I feel her moving ALL day long now. She's just like her sister, very active bub! It's nice to be able to feel her moving - I don't worry so much about her when I feel her moving every single hour... Surely that's gotta be a good sign.

A couple more specific prayer requests

I know that so many people have been praying for us and for the baby - and this blog is a great way to keep so many people updated all at once. I've been thinking about adding in some other "prayer requests" for a while, specific things for people to pray for during this pregnancy.

I already mentioned that one of the most important things for the baby's survival is that the rib cage is not too small for her lungs to grow. This is still the most important specific thing that people can pray for - that her lungs will have room to grow and be large enough to support her life when she is born. 

Another thing that I'd really like prayer for is the amount of amniotic fluid that I have. Currently the levels are normal, but there are two common problems with babies with skeletal dysplasia, they often have either too much or too little amniotic fluid. Too much can be caused if the baby has problems swallowing, and too little can be caused if the baby has problems with the kidneys. At our last two ultrasounds, there were signs that the kidneys were swollen, this may indicate some kind of a blockage, so I don't know whether that means that we're more at risk for too little amniotic fluid, but so far everything is OK there. We can pray that it stays that way! 

Both of the problems with amniotic fluid levels may lead to the baby needing to come early - so please pray that I will be able to carry the baby to term, so that she has the best chance of development. I know it's already an uphill battle so she doesn't need the additional complications of being premature as well. 

Another thing is that it's quite common for babies with skeletal dysplasia to be breach. I think the reasoning is, their arms and legs aren't as long and strong for them to turn into the correct position. This may lead to needing a C section instead of being able to give birth naturally. I know that ultimately, if it's in the baby's best interest, we will need to do that. But I really don't want to have to go through that! So even though that's more a prayer request for me rather than for the baby, please add that point to your prayer list as well!!

There's just a week now until our next ultrasound so I'm looking forward to seeing the latest images and measurements of our little girl. Hopefully there'll be a bit of good news in there too. 

Thanks so much for all your support and prayers so far, I really appreciate it all. I don't think I would be able to go through this hard time without my family and friends who have really given me so much strength, and ultimately that strength comes from God. So thanks for thinking of us and praying for us. Please remember to keep us in prayer over the next few months as well :) There's still a lot ahead of us...

20 week scan - public hospital

So yesterday I went to the public hospital to have my scan. This public hospital is a teaching hospital so at first, a student doctor started the scan. It was pretty slow going because she seemed like she hadn't done many ultrasounds before. After a while, the nurse/doctor supervised her, and then after another while, the head doctor came and took over. All up, they scanned the baby for an hour and 20 minutes!! And the beds there are soooo uncomfortable!! But it was nice to see the baby for so long. She was moving a lot during the ultrasound and it's so cool to feel her and see her move at the same time. It gives her movements more meaning, to be able to see her moving as well as feeling it. 

I had a lot of questions and had them check a few things, things that in my research may be indicators of what type of SD the baby has. Here are some of our new findings from yesterday:

The baby does not appear to have a cleft lip or a cleft palate. A cleft palate is present in about a third of babies with Diastrophic Dysplasia - but it's present in just about all of the lethal form of DD called AO2 (Atelosteogenesis, type II). The feet also don't appear to be very clubbed, and the baby is able to make a fist with her hands (something that some DD babies can't do). The bones also appear to be straight rather than curved, another thing common in DD babies. Last time, I thought he said that the kidneys were small, but he actually said that they were swollen - I think maybe I just misunderstood him last time. That could indicate some kind of blockage, but I don't really know the relevance of swollen kidneys. The chest to abdomen ratio at the moment is 0.73. "Normal" is between 0.8-1, "lethal" is around 0.5. So between 0.5 to 0.8 can indicate impaired lung function, but maybe or maybe not lethal. At least 0.73 is closer to 0.8 than it is to 0.5 so hopefully the number stays that high, or even increases rather than decreasing.

I asked the doctor if he thought it could be DD, and he said "The hands certainly look similar to that but we can't be sure. It's quite rare and Achondroplasia is much more common."

I also asked the doctor whether he thought that this condition would be lethal or non-lethal, and he said that it was hard to say for sure at this stage, but it's a bad sign that it presented so early. Usually if skeletal dysplasias are detected before 20 weeks, it is lethal. Although there are exceptions to that, and DD is one of those exceptions.

So all in all, I have some questions answered from this appointment, but we still don't have an answer as to what exactly is wrong and whether the baby will be able to survive. I do however feel that the doctor there was more willing to answer my questions and discuss his thoughts more openly so I did feel like I got more out of that appointment compared to my appointment last Friday with the private doctor. On the down side though, out of all the doctors I've seen in Hong Kong for any kind of problem, he has to have the poorest English. It's harder to understand him and sometimes he misunderstands me too. But it's still nice to feel more listened to, and I appreciate that about him.

My next appointment in the public system is on April 9 - I think I'll be 24 weeks, and then with the private doctor on April 12. Until then, it's just wait and see. 

Keep on growing, little bub!!

Why not knowing is so hard

I thought I'd write a follow up post to my one about not knowing what the outcome is going to be and my frustration in that area. I feel a bit misunderstood in some ways about my last post and thought I'd explain why not knowing is difficult.

It's not that I don't trust God (maybe I do need to trust Him more, but don't we all?), and it's not that I'm overly worried about it all (yes I am concerned but it's not consuming me. I'm still playing with my daughter, meeting up with friends, laughing, enjoying life at the moment). I don't feel like I am wasting time thinking about things that are not going to happen. I'm not depressed. What I am doing is trying to prepare for the future, and it's a complicated future. 

I know that not many people have had to go through something like this, and I know that even those who have, their situations are usually different to my own so maybe it's impossible for others to understand. We have the added complication of living in a country that we don't call home and so if a funeral will need to be planned, it will have to involve body repatriation in some way or another. We would be negligent if we knew that there was a likelihood of needing such a service and not looking into it in advance. 

What I would love, but do not have, is some assurance that I will not need to plan a funeral for a child that is alive and kicking inside of me, however I know that I may not get that assurance. I do not have a specific promise from God saying that this child will not die, I will not ever have a 100% guarantee from the doctors. We most probably will, in time, have a "probably" one way or another. I do have a "gut feeling" that this child will live. But I will most likely not get any complete assurance one way or the other.

I do think that I need more patience and maybe these are issues that I should be thinking about in 10 weeks time when I'm 30 weeks pregnant and the doctors will probably have more to say about what's going on. Maybe we should look into funeral plans at least a bit regardless of what happens. I'm sure it's better to be somewhat prepared than to be blindsided and then need to start the preparations from scratch in the days after delivery and loss.

We are fortunate that this is our 2nd child and so we won't need to go out and buy all the baby things and then have to face an empty nursery. Even if there were no complications, we wouldn't be buying much anyway, particularly since we know it's another girl, we won't even need new clothes. So at least we don't have those issues to think about so much. 

I don't think the answer is to just completely stop thinking about the issues that we are facing. To do so would be doing ourselves and our baby a disservice by not preparing ourselves when we have been given the opportunity to prepare (so for those of you who said that I should just not think about these things, I have to respectfully disagree with you on that issue).

I think that from here, our plan is to stick with the current doctor for now, knowing that I am still only 20 weeks pregnant and most probably she's waiting til later in the pregnancy to start making a diagnosis. There are things that I really do like about this doctor. If I am still feeling the same frustrations about her after a couple more appointments, I will seek a second opinion when I'm around 30 weeks pregnant. By then, the issues should be easier for another doctor to diagnose, and that also gives our current doctor time to grow on me a bit more. 

I also think that I will hold off thinking about the possibility of a funeral for a while - and when I'm 30 weeks, we can think about it again, whether we are confident enough to not look into it, or whether it would be better to do a bit more research (hopefully unnecessarily, but it's better to look into it and not need it than to not look into it and wish you had). 

And in the mean time, I will draw comfort from knowing that even though I don't know what will happen, God knows and He has a plan for us. I know that although I can't yet see the end of this tunnel, I know it's only just over 4 months until the little one will be here and we will know more of what the future holds. Until then though, we just need to keep walking and see where this journey takes us...

Not Knowing

Since my appointment yesterday with the doctor, I've been really having a hard time with things. I had certain expectations with the appointment, I thought it would answer some more questions and give us some more information but I walked away with pretty much nothing new at all. It's quite a feeling of hopelessness, not really knowing what's going on. I like to know stuff and can't handle the not knowing. Even when my husband starts a sentence and then takes it back, I make him tell me what he was going to say because I hate knowing that there's something that I don't know but not being able to figure out what it is!!

I've been thinking - should I go to yet another doctor and get another opinion on things? I'd love to have a doctor who was as blunt and upfront with me as possible and I don't feel like I have that right now. I know that they cannot guarantee a correct diagnosis at this stage but I'd like to at least have some idea of what the possibilities are. I'd like to hear an opinion at least, besides "wait and see". I don't even know how to find a doctor who is specialised enough in these areas AND blunt enough to tell me their honest thoughts... 

Or maybe I should just accept not knowing until later in the pregnancy, or when the baby is born? I know that no diagnosis will be 100% anyway and I've read stories about how both lethal and non-lethal diagnoses were wrong, so maybe it's better to not know, because at least that way aren't expecting anything... I really don't know. I know that in all likelihood they should be able to tell me whether they think the baby will live later in the pregnancy, even if they are hesitant to predict that now...

Two things that friends have said have stuck with me. I was talking to my brother yesterday and he said "Well for you, a diagnosis won't change anything anyway because you're planning to continue with the pregnancy anyway" - and I can see that... maybe I should wait until later in the pregnancy before I get frustrated at not being told whether the doctors think my baby will live because really it doesn't affect anything either way... And another friend commented on my blog post yesterday saying something like "regardless of what the doctor says or doesn't say, that doesn't change the health of the baby - and that's the important thing" - and again I can see that. For now the baby is healthy and what will be will be. The doctor's words aren't going to change anything, and they can be wrong anyway - so maybe I should just be happy that for now, the baby is growing and developing, and has nothing immediately life threatening. 

Maybe my "need to know" is doing myself more harm than good. My husband is better at accepting that there is stuff that he doesn't know and he's generally happier to wait to find out (except in the case of birthday presents!). Maybe I should learn from him and trust God that in time, I will find out the answers rather than troubling myself with trying to find them right now.

The hardest thing for me right now isn't the thought of raising a child with a disability. I'm ok with that, particularly in this situation where chances are, the baby's mind will not be affected. I don't want to lose the baby but I'm prepared to go through that if we need to. The hardest thing though is not knowing which of these two extremes it will be. Not knowing whether in 4 months, we'll be bringing home a special little girl who will change our lives more than we could have imagined, or whether we're going to be burying her. I hate not knowing...

20 week scan

Today I had my 20 week scan. I've got kind of mixed feelings about how things went there...

The good news is that the baby is growing, the head and trunk are still measuring normal, there is nothing right now that says that the baby will definitely not be able to live. The limbs are still measuring short but they have grown since the last scan (although they are now measuring at 15 weeks, but 3 weeks ago they were measuring at 14 weeks). 

There's no real "bad news" per say, but it was quite frustrating, I came armed with my questions and the doctor (understandably, I guess) was quite vague in terms of the responses. It was still just "wait and see" and "when the baby is born..." etc. I outright asked her what she thought the baby's chances of survival were but she wouldn't answer. I understand that she can't say for sure "this baby will live" or "this baby will not live" - but I don't understand why she can't say "from the way things look now, I would guess that the baby has an good/fair/poor chance of survival, but things can change either way so we need to keep monitoring it closely". She did more talking about me and how it's normal if I'm feeling depressed and asking how am I coping emotionally than she did talking about the baby. Also I didn't get to keep any of the pics of the baby this time which was kind of disappointing. I didn't specifically ask though, I probably should have... We did get to see the baby's face again on the 3D scan and I think she looks a lot like Lana... 

I have another appointment with a different doctor on Monday, I'm currently seeing both a doctor in the public system and one in the private system as well. I figured I'd keep going to the two of them and that way I'll have two opinions. But if it's two closed-mouth opinions, I don't know if there's much good in that...

My thoughts on abortion

I had always known that I would not under any circumstances have an abortion. So in this pregnancy, when we found out that there may be problems, it wasn't even an option for us. I believe that God gives life, and who are we to take a life? 

When we found out that there was a possibility that our baby may have Downs Syndrome, it wasn't even a consideration that we would possibly abort the pregnancy. However when I was researching about Downs Syndrome, I found out that something like 90% of women who find out through amniocentesis that their baby has DS chose to terminate. The numbers astounded me, I had no idea that it would be that high! I think that this number is so high because of a couple of reasons. Firstly, many women who would not terminate also decide not to get the amnio in the first place. This probably drives the statistic up a bit. Secondly, from my experience, as well as reading other people's blogs, some doctors often try to pressure people to decide about termination as soon as they find out the bad news, sometimes even offering the procedure the following day. I think that the doctors are probably coming from the point of view that termination is less complicated earlier in the pregnancy. And also, there's a time at which it becomes no longer legal, depending on where you are. 

My personal opinion is that if someone does receive bad news in their pregnancy, they should wait at least a week before making any decision about termination. (Well actually, I am personally against termination entirely, but I'm not going to force my opinion on others.) The reason why I suggest waiting is that I know that it takes a while for the news to sink in. I know that when I found out that the problem in this pregnancy was NOT Downs Syndrome but Skeletal Dysplasia, I have to admit that I had negative thoughts and if it hadn't been for my stance against termination, I may have started to consider the idea. I asked God "Why did you let me fall pregnant if you knew that there would be issues?" and I thought "I'd rather NOT be pregnant, then at least I could be trying to conceive and maybe I'd have better luck next time." I'm really quite ashamed to admit that now because in the past three weeks since we got the news, my thinking has changed soooo dramatically that it's not funny. 

When we initially got the diagnosis of Skeletal Dysplasia, I was WISHING that our baby had Downs Syndrome. But I'd already had a couple of weeks to get used to the idea of DS. I knew that people with DS generally live on average til their 50's. Babies with DS are often happy and sleepy, and children with DS bring a real joy to their families. Yes, the disease affects their intelligence. Yes they will have special needs, but at least they are generally pretty healthy and live a decent life span. Since DS is one of the most common congenital diseases, there is a lot of support for parents and families affected with DS, options available to them for schooling and even jobs as they get older. Yes it's a different, more difficult life. But I really felt a sense of "We can do this, it's not so bad".

Skeletal Dysplasia on the other hand scared me completely. The 55% mortality rate is the thing that really hit me. I had quite a high chance of not even being able to spend more than a few weeks with my baby, maybe I wouldn't even get to see her alive at all. I felt that I could deal with disabilities, but what I really felt I could not handle was the possibility of losing a child. I can understand the initial feeling that hits someone faced with that possibility. It's the feeling of "What's the point of carrying this baby for the next 4-5 months, going through all the associated pain (both physical and emotional), and then not even being able to bring home a baby at the end of it all?" 

With the three doctors that I saw in those couple of days, I was always sure to bring up the subject of termination myself so that I could tell the doctor that we would not consider it before they could even present it as an option. I'm glad that I did that because even though it was presented as an option, I had already decided and was not going to be swayed, even though my emotions were crying out thoughts that I never thought that I would have. 

Now that I have had the chance to really research Skeletal Dysplasias, I am all the more sure that I am making the right decision to not terminate - even if it wasn't for my personal beliefs. Firstly, with these kinds of birth deformities, there are two categories - lethal and non lethal. If our baby had the lethal form, then sadly, there is only one outcome in those situations and that is death. Nothing I do would change that outcome, but at least choosing not to abort, I will not have the associated guilt and "what if the doctors were wrong" that would come along with that. And in my limited research, I've found at least five or more lethal diagnoses that produced babies with non-lethal forms. If our baby has a non-lethal form on the other hand, generally speaking, there is no reason why she would not be able to live to a ripe old age, go to university and do just about anything that she wants. I know that there may be other medical issues that come with the disease, but I am sure that I would never regret my decision not to terminate.

I really think that it is one thing to say "I would not abort", but it is another thing entirely to be in the situation where abortion would be an understandable option and to go through that knowing that choosing not to abort is still the right decision for you. And I have walked that road, and I am more sure now than ever that we are making the right choice and giving our daughter every opportunity to live.

17 week ultrasound photos

Ok, so I'm finally putting up some ultrasound pics. I'm not going to put up all of them, just the ones that are either the cutest, or the ones that show the most information. A lot of the pictures are just of a random limb so that the measurements could be taken. I'm not putting up those pictures coz they're kind of boring. This ultrasound was taken 2 weeks ago when I was 17 weeks into the pregnancy. Everything measured normally except for all the bones in the limbs which measured consistently at 14 weeks. For more information, read this post. 

This is the profile shot, just for cuteness factor. I don't think that much can be seen here about the baby's condition. You can notice (slightly) that the abdomen is larger than the chest/ribs area, but I don't think it's that obvious in this shot...

This is the hand of the baby. The real "cause for concern" is that the thumb is not positioned correctly. Remember in my previous post, I mentioned "hitch hiker's thumb"? This is what it looks like on the ultrasound. (we have multiple pictures of this, this shot captured it the clearest though). 

3D shot of the baby. If you look closely, you can see the shape of the hand in this shot too. (if you click on the picture, it will enlarge and make it easier to see). The arms are disproportionally small, although probably if you're not a doctor, it's harder to see...

You can kind of see the other hand in this picture, although it's somewhat mushed against her face so it's harder to tell the shape of the hand. My understanding is though that the two hands are shaped similarly.

Another 3D shot. The arms do look very small here, even to me. 

So, there's the pics from my 17 week ultrasound. My next ultrasound will be at 20 weeks (which is next week). Hopefully I can get a bunch of pics from that ultrasound too.

What if...?

I've always been the kind of person who has thought through all the possible outcomes to a situation and worked through them, even when they're not likely to happen. I remember saying to my husband 5 years ago before we got married "If anything ever happens to my parents, I want my (then) 7 year old sister to live with us". Bernard was flabbergasted that I even had THOUGHT of the situation in the first place as it's not something that is particularly likely. Whenever we talk about anything regarding death or bad things happening, it's because I brought it up in a "What would you do if..." kind of question. Bernard rarely knows how to answer because he hasn't really thought about it.

The situation we are in at the moment lends itself to soooo many different "what if" kinds of questions that my mind is working overtime trying to process it all. Usually right at bed time when I'm about to fall asleep. Most of the time, Bernard is already pretty much asleep and I whisper quietly "Baby, are you awake?" I hear a grunt and so proceed with my latest thought, "What are we going to do if..." - then after he says "I don't know, I haven't thought about it", I fall asleep and leave him awake frustrated at me disturbing his sleep (this isn't a new thing either, I've been doing that to him our entire married life!!)

Most of my questions lead to more questions and I know that it's impossible to know the answer to all of them before the baby is born, or at least, diagnosed... but just thinking about it helps me to prepare myself for whatever is to come.

Best case scenario, what if the baby lives and is perfectly normal? I know that medically it's unlikely - however I also know that stranger things have happened and so we can't completely rule out the possibility. Would we be glad that we found out that there may have been a problem, even if it turned out to be wrong? Hard question. But I like to think that in this situation, we would be so thankful with the blessing of life and health that we wouldn't be bothered being mad about a wrong diagnosis. Yes it's caused extra stress throughout the pregnancy, but it's also caused a greater awareness for these issues - I had never really known about skeletal dysplasia before this pregnancy, and it's also given me a greater appreciation for good health - particularly the health of our first born daughter. 

Worst case scenario, what if the baby doesn't make it? Will we have to go through all the labour and delivery and funeral in a country which we don't really call "home" without our closest friends and family around? Would we go back to Australia for the birth of the bub if we had a lethal diagnosis? Would that be in the best interest of the baby? Would the doctors even LET me travel back since I'm now a "high risk pregnancy"? Would we have the baby here in Hong Kong and then go back to Australia for the funeral? So many questions but I don't really want to even start looking into the answers to those unless we get the dreaded news. I think that while it may be helpful for me to think of the options, answering these questions would be particularly stressful and not something I want to do unless absolutely necessary. 

The "middle ground" scenario - what if the baby lives but has a form of dwarfism that she has to live with for the rest of her life? Is Hong Kong the best place to raise a child with disabilities? I've always said that it's not - and even before I was pregnant, I told my husband (in one of my "what if" moments), "If we ever have a baby with special needs, I'd want to move back to Australia right away". Now that it's actually a likely outcome, I don't know if it is the best option. I guess I need to really look into the medical system over here AND in Australia and see what each offers. From my online research, most of the specialist doctors are in the US - would we want/need to travel there for some of our medical advice? There's no doubt in my mind that socially, Australia is a much better place than Hong Kong for people with special needs and disabilities.

From reading other peoples blogs, I know that some forms of dwarfism (particularly Diastrophic Dysplasia, which is my suspicion) come with a whole lot of medical issues. Pretty much from birth, most children need to have some form of leg casts and braces to try and correct clubfeet. Many children also are born with cleft lips/palates which may need surgery to correct. Some babies also need braces or casts on their hands to correct the hitchhikers thumbs (which it seems like our baby has). Since this is such a rare thing (I think for DD, it's something like 1 in 500,000), do the doctors here have the experience to deal with these issues? Or the doctors in Australia, are they any better? I really have no idea of the answers to these questions. I just want what's best for my child.

I do know that if the baby lives and does have a non-lethal SD, more than anything I will be glad that she made it. And I would rise to the challenge of meeting her needs and raising her to the best of my ability. I sometimes feel completely inadequate for the challenge. 

When we first got the SD diagnosis, I remember crying with Bernard and saying "I'm not strong enough for this" - but I realise that really, no one is strong enough. No one thinks that they are going to have to go through something like this - but having to face it brings something out in you and you realise "I can do this. Not because I want to, but because I have to."

At the moment, everything feels so uncertain, there are more questions than answers. But I know that one by one, over the next less than 5 months until the baby is born, we will have to answer those questions. Not all of them, because I know that each ultrasound will give us more information and let us know what the likely outcomes are. I know that things probably won't be "certain" until the little one is here and we know more clearly what's going on.

Loving Little Leah

I've been reading a bunch of other blogs lately, particularly ones where the mother was diagnosed in pregnancy as having a baby with Skeletal Dysplasia. Some of these blogs have a good outcome, others sadly don't. One blog which I LOVE is Loving Little Leah. Leah had a lethal form of Skeletal Dysplasia called Short rib polydactyl syndrome (isn't it crazy, probably 99% of us haven't even heard of such a disease) and spent 45 minutes with her parents before she went to heaven. Leah's parents, Amy and Jeff, have such an inspiring attitude through all this - and sooo many of their posts have such great stuff in them. I wanted to share one in particular though. 

Reflections

When we saw our daughter she was so beautiful, it was hard to understand why she couldn’t live. I knew that her little chest was too small. I knew it couldn’t hold healthy lungs, that she didn’t have functioning kidneys, that she was too small and so weak, but it didn’t connect at all with the full picture...her chest didn’t seem that little, her body too weary. She seemed so perfect.

Leah’s little body was distorted enough to cause death, but not enough to make her seem anything but lovely to me. Her creation stunned me in the moments that I saw her. She came out of me. Marvelous. Incomprehensible. Amazing. We rejoiced in how wonderfully she had been made.

Yet my beautiful child was suffocated by her skeleton, a deformity lurking inside her that prevented her from having the full and happy life I longed for her to have.

I don’t presume to know the mind of God, but I do think that becoming a parent has helped me comprehend his character as a father more fully. I wonder, as he looks upon me, as I looked upon my child, does he feel the same thing? Love for a creation so beautiful and yet so inwardly crippled, longing for his child to live fully in him, unhindered by the deformity of a sinful nature?

This pregnancy

This pregnancy has in the most part been extremely similar to when I was pregnant with Lana. I've had no morning sickness, a small amount of "stretching cramps" which are pretty normal in the first trimester... I haven't started the dreaded foot/leg cramps yet - but with Lana, I didn't get that til late 2nd trimester and into the 3rd trimester though.

The only difference that I have noticed so far is that it's harder to feel the baby move. This is normal in pregnancies with a Skeletal Dysplasia baby. The limbs of the baby are much shorter than in a normal pregnancy, so what would usually be a fully fledged kick only feels like a little flutter. I have been feeling the baby move a bit - mostly rolling around rather than kicking though, I think. 

People are asking me all the time how I am. I tell them I'm perfectly healthy - there's absolutely nothing wrong with me. I'm not feeling sick, because I'm NOT sick... the problems only affect the baby. I don't know if this is true of other SD pregnancies, or even in other high-risk pregnancies. But it does feel kind of strange to know that something potentially life-threatening is happening to the baby and I feel absolutely nothing.

I know in my previous posts, I didn't go into detail about what the problems are with the baby... so I'll do that now.

I had my ultrasound at 17 weeks. At the time, all the bones in the limbs were measuring around 14 weeks, but the head and the length of the baby were right on 17 weeks. So far, the internal organs all appear normal (thank God!), although the kidneys may be a bit small. The rib cage appears to be a bit restricted. I can't remember the exact measurement but it was in the 25-50% range. Not dangerously small, although the doctors warned us that this measurement may get worse later in the pregnancy. This is the real determining factor in whether the baby will be able to live or not - most babies with lethal SD die because their lungs have no room to develop in their restricted chest cavity, so when they are born, they cannot breath and usually only live for an hour or so. So if you're praying, please pray in particular for the baby's ribcage to continue to grow larger, and for her lungs to develop normally. This is the most important factor in our little one's survival!! I read that in normal babies, the chest to tummy ratio (not the technical name, but it's nearly 1am!) should be 0.8-1. In lethal SDs, this ratio is around 0.5. Our bub has a ratio of about 0.7 - so not "definitely lethal" but it could be better still!!

In addition to these issues, the baby has what appears to be a "hitch hiker's thumb" - that is, it is in the wrong position, similar to the image below.

Also, she appears to be club footed - although at the ultrasound we couldn't see the feet so well because the umbilical cord was covering them! And the chin appears to be small as well.

I have TONS of ultrasound pictures. With Lana, when I had an ultrasound, we would get maybe 3 or 4 pictures from each ultrasound. With this bub, we got 40!! I'm not kidding, I just counted them all. With Lana, we had to pay extra to get the 3D ultrasound done. With this bub, they just turned it on without even telling us they were going to do it. I'm going to have to upload some of the pics to post on here.

I read something early in this pregnancy (before I even knew that there were problems) that said "It's important to remember when you have your ultrasound that the purpose is NOT to get the first photo of your baby for scrapbooking - the purpose is to look for abnormalities", and never before did I realise how true that was until I was in this situation!! 

Anyway - I've been going over the "medicine" of this pregnancy, the numbers and everything, and I have a non-medical opinion that the baby MAY have Diastrophic Dysplasia but I'm going to wait and see what the doctors say. I just want to be able to say "I said it first" if it turns out to be the diagnosis ;) The symptoms seem to fit (particularly the shape of the hands, it's a very common sign of DTD)... and a good thing about that is that Diastrophic Dysplasia is not lethal - lifespan is normal, the mind is not affected... Matt Roloff from the show Little People Big World has this form of dwarfism. Anyway - we'll wait and see what the doctors say.

So at the moment, I'm feeling pretty good about our chances of having a non-lethal form of the disease. From reading the blogs of mothers with babies who have died from this, their numbers seem so much worse than mine and they often had other complications as well, such as no amniotic fluid, or problems with the baby's internal organs. I'm feeling positive - although I know that I'm not a doctor. One fellow SD mum said to me in an email today, "It sounds like you have lots of reasons to be optimistic- most of the people I have talked to that had a poor outcomes got that news right away. It sounds like you will soon be researching on raising a little person." - it made my day!!

I know that even if we DO have a "little person" baby, we will be faced with other issues and obstacles. Maybe surgeries, braces (not on the teeth - the ones that go on their bones to try and set things in the right position), then the whole social aspect of things as well. But I just want this little one to live and be healthy!!

So I'm cautiously optimistic. I know these things are so hard to diagnose and sometimes a lethal diagnosis results in a healthy baby, and sometimes it's the other way around too. It seems to be one of those things that you can't really tell with 100% certainty until the baby gets here. But I'm still feeling good :)

Thank you

In the last day or so since I started this blog, I've gotten soooooo many emails and messages from friends, and I just want to say thank you all so much for your love and support! I really don't know how I would manage on this journey without such great friends and family. 

A couple of especially warming things they have shared - one friend, who I always knew had a disability but wasn't sure exactly what it was, shared that it was also a type of Skeletal Dysplasia. When he was born, the doctors didn't expect him to live more than 6 months. He is now just about 30 and leads an extremely active life which includes a silver medal from the Commonwealth Games! 

Another friend shared how her baby started showing signs of problems at 28 weeks and the doctors suspected that the baby may have had some form of dwarfism (a type of SD). They monitored the baby closely and ended up having to perform an emergency C section at 34 weeks. The baby had a rough start and spent 6 weeks in the hospital - but now is a healthy 2 1/2 year old without dwarfism. 

I've also been searching for other blogs written about SD pregnancies/children. A lot of them do not have happy ends - but I especially love How Life is Measured and Evan's Story, both of which talk about their SD babies who were given a lethal diagnosis but surprised the doctors by living - both do have different forms of dwarfism, but are happy and healthy toddlers now (neither of the blogs have been updated for a while though!!)

I also wanted to add, with regards to my last post, it wasn't meant to be a "stab" at anyone in particular. I was writing generically about the things that I've personally found helpful and what I haven't found helpful. I apologise if I have caused anyone offense. I know that people are just trying to help in whatever way they know how. And I know it's a difficult thing to do - so I will try to grow to be more gracious and appreciative (the comment about "completely discrediting yourself" perhaps went a little far... So sorry!!) 

Thanks once again, for helping us to stay positive and for being there for us in this difficult time.

What to say?

The past couple of weeks - ever since we received the bad result on the nuchal fold test - people have been trying to give us various words of encouragement. I try to accept them all with grace because I know that the person talking to us is trying to help somehow. But some things are more encouraging than others, and some don't help as much but instead make me more upset. Maybe someone else in my position would be encouraged by it, I don't know.

For me, what has been encouraging me has been the simple "I'm thinking of you guys" or "I'm praying for you". Another encouraging thought has been when people have given us different scriptures - if you don't know the words to say, there are often words in the Word of God that will be encouraging.

I have found a lot of encouragement in talking to my friend Heather who not too long ago, lost her baby girl Madelyn. Her story is found here. She has walked this road of uncertainty before me and knows what I am going through right now. Just about everything that I have said to her, she has said "Yes, I've been there" - and in a lot of cases, she can even tell me how I am likely to feel as the pregnancy goes on. I hope that our stories deviate - and I'm sure that she hopes that for me as well - but our high-risk pregnancies will still have that common ground regardless of the outcome.

What I personally do not find encouraging is when people tell me that everything is going to be ok. Because everything is NOT ok. I don't say that because I lack faith - but regardless of the outcome of this situation, I have already lost something. I've lost the "perfect, easy pregnancy". I have to go to more frequent check ups. Instead of looking forward to each ultrasound as an opportunity to see our little one, now they are tainted by the knowledge that the doctors are looking to see whether our baby may not make it. I also will probably not be going to my hospital of choice, but I will need to deliver in a hospital more suitable for dealing with high risk cases. Even if the baby turns out to be perfectly normal (which medically is unlikely, but I know that miracles do happen), it is still a hard road that we are walking right now. 

So please, if you know someone who is going through something like this, don't minimise what they are going through with pleasantries that don't really identify where they are at. Acknowledge that they are going through a hard time and need your love and support. Don't tell them what the outcome is going to be unless you're a medical doctor who knows their particular case, or a prophet who has a specific word for their situation (note, if you do tell them what the outcome will be and you are wrong, you will completely discredit yourself). 

I have been on the other side of the fence and I know what it is like to not know what to say. I always mainly just said the simple "Thinking of you, praying for you". But it wasn't until now that I learned that in a lot of situations, that may be the best thing to say after all...