Tuesday, October 29, 2013

Delivery options

Going into pregnancy for the third time, you would think I'd have the delivery stuff down pat - but life is not always that simple!

I already suspected that my spinal surgery in May could complicate things - in particular, with regard to whether or not I could have an epidural or not. In both of my previous deliveries, I had an epidural and I wasn't keen to do it without - particularly given my past need for induction which brought on labour painfully strongly and quickly! 

Yesterday I had an appointment with the anesthetist to discuss my options. She has recommended that I try not to have the epidural for a few reasons - first of all, having the surgery increases my risk of complications from the epidural; and secondly, the scar tissue which would have formed around the similar level to where they would put the epidural would make the epidural "unpredictable". Basically, I could have the epidural and possibly have little pain relief from it if the scar tissue blocks the flow of medication to those nerves - or maybe worse, I could have asymmetric pain relief, eg, pain relief to only one side of the body, or perhaps pain relief to the upper abdomen but not the lower abdomen. In short, the benefits are (potentially) reduced and the risks are much higher for me now. 

Now I'm not actually that scared about labouring without anesthesia - however I AM more worried about the way the hospital's policies make you labour. With induction, in my experience, they were very insistent that I stay in the bed at all times and very strict that I had continual fetal monitoring. With Maddy, the midwife freaked out when she saw my file and demanded that I lie in one position, not even allowing me to roll to my other side since the monitors kept losing Maddy's heart beat! Since the it's likely that I might need the induction again (judging from past experience!) I know I will have to fight in order to be mobile during labour - particularly if I'm going to try without the epidural. I'll also need to have better strategies for natural pain relief.

In addition, this baby is STILL breech at 34.5 weeks! I remember reading in my pregnancy with Maddy that it was common for babies with skeletal dysplasias to be breech since their legs are shorter and kicks are weaker, so it is harder for them to turn. I went back through my blog and found that Maddy had turned by around 30 weeks so I'm starting to worry about this little one! I've asked my DD support group and many of their little ones were breech too.

Up until today, I had assumed that they would do an ECV to manually turn the baby, however I had two doctors today (both my private obgyn and the public hospital prenatal diagnostician) tell me that they would not recommend it for a baby with skeletal dysplasia. 

So basically, if the baby does not turn within about 2 weeks, I will be scheduled for a cesarean. Here, they schedule the cesarean between 38-39 weeks to reduce the chance of the mother going into labour and then requiring an emergency cesarean. So for me, that would probably be the last week of November. 

I'm not thrilled with the thought of having a cesarean either - it does have pros and cons though. Firstly the pros: I think if she is born earlier (but not premature), her chances of being home for Christmas are greater. In addition, I AM able to have a spinal anesthesia so it kind of solves the pain relief situation. I like the idea of scheduling it in some ways, particularly with the added stresses of having a baby with special needs. The hospital will be more "prepared" for her arrival. And given the choice of elective cesarean or emergency, the elective cesarean is far more preferable for everyone involved.

The cons - the big one is the recovery. I had great recoveries the previous two times and was up and walking immediately. Particularly with Maddy, I was going in to the hospital every day (sometimes multiple times) and really forgot at times that I'd just given birth. I know the recovery from a cesarean is slower and more painful, generally speaking. Also, I think at this hospital, they don't "allow" you to walk for 24 hours after the surgery - so it will be more difficult for me to go up and see the new baby who presumably will be in the NICU. In addition, a cesarean means a 5 day hospital stay as opposed to a 3 day stay - and I don't relish the thought of being in the hospital for a minute longer than I need to be! 

All in all, I feel less prepared for this delivery than I did with either of my previous two, and so much depends on whether or not the baby turns. I guess we'll have a completely different experience either way - and I'm not sure whether I like either one of them!

Please keep us in your thoughts and prayers - and I will try to update more frequently with news of this little one, who could be with us within the month!

Monday, October 7, 2013

Maddy's orthopedic update

Three months ago, when we were in the US, we had an appointment with Dr William Mackenzie, an orthopedic surgeon who specialises in skeletal dysplasias. He had a few suggestions as to how to treat Maddy's feet, hips and spine. 

In Hong Kong, we see not one orthopedic team, but two. Our spinal team deals with all spinal issues, and the pediatric team deals with everything else. After we returned home, we brought Dr Mackenzie's thoughts to these teams to hear their thoughts.

Our pediatric team was completely on the same page as Dr Mackenzie. For her hips, we will continue to observe them as she grows - her hips are not great, both the head of the femur (thigh bone) and the socket of her hip joint are misshapen but for now, she can use them and any surgery could theoretically worsen that. When she is older, she will need a hip replacement, maybe around age 30 or so. For her feet, our orthopedic doctors agree that the current orthotics don't provide enough support for Maddy's ankles and so this week, she will be fitted for dynamic AFOs.

Dynamic AFOs, pictured above, are basically an "ankle-foot orthotic" with a hinge at the ankle - that way the ankle can bend forwards and backwards, but not sideways. Maddy sometimes has a habit of walking on the inside of her foot, even when she is wearing her orthotics (the TVB Pearl documentary picked up on this and made it look like she always walks like this! She doesn't, only sometimes. But regardless it's not good for her ankles and these will provide better support for them). 
Onto the other area of concern: Maddy's spine (see this post for a lovely x-ray of it!). Dr Mackenzie's opinion was that we should start casting Maddy's back to potentially delay the need for surgery. Eventually she would need growing rods to support/correct her scoliosis but the best thing would be to avoid that for as long as possible. The spine has been the major concern for me and was the cause of a nice little meltdown the other day.

When we arrived back in Hong Kong, I saw one doctor on the spinal team. I discussed Maddy's case with him and he recommended against the casting for various reasons. I mentioned Dr Mackenzie's thoughts to him and asked if he could contact him and his response was "I could contact him but it wouldn't make me change my opinion anyway." This response bothered me - but as he was going to refer me to maybe the most senior doctor on the team, I figured I would just let it go and see what the other guy had to say.

I was really excited to meet with this senior doctor - he is very well respected, is a professor and has made some amazing and exciting contributions to spinal surgery. The appointment with him went very well, I thought.

At our first appointment with the spinal team back in January of last year, a doctor there mentioned that Maddy had a hemivertebra. At that stage, it was just a "kink" and the scoliosis had not yet developed. What is a hemivertebra? Have a look at this picture:

Basically, a hemivertebra is when only half of the vertebra develops. As a result, you see this kind of a "kink" in the spine and the spine then curves into a scoliosis so that the body isn't held at this strange angle.

Since the hemivertebra had been mentioned before, I didn't question it when this professor brought it up again. Basically, his plan would be within the next 18 months or so, to remove the deformed vertebra and fuse the two vertebra either side of it together. Doing so would remove the source of the scoliosis and theoretically, it would improve the curves in Maddy's spine. He also commented that casting was not likely to be effective in the upper thoracic region where Maddy's main curves are, and that this was our best option at the current time. We planned to do a CT scan to get a better picture of the hemivertebra and to be able to prepare for probable surgery.

I left the appointment feeling quite positive - of course I dread the thought of spinal surgery, but this kind of surgery is far less major than putting rods along her entire spine, and it is a plan - I like to have a plan! I neglected to ask this doctor if he could consult with Dr Mackenzie as I thought I would go home and ask his opinion on this plan myself.

I emailed Dr Mackenzie and waited for his reply. When he wrote back, he told me that he does not believe that Maddy has a hemivertebra, that he would still recommend casting, that he would avoid surgery for now and that he would not recommend having the CT scan as he was quite sure it was not a hemivertebra anyway (it is best to avoid unnecessary CT scans as each scan contains the same level of radiation as something like 100 x-rays). He also confirmed that casting was probably not going to correct the curves in Maddy's upper spine (where her major issues are) but that it was likely to have a positive effect on her less severely curved lower spine.

It is a hard place to be, stuck between two differing opinions of two highly qualified doctors. Not knowing exactly what to do, I emailed our doctor here in Hong Kong with Dr Mackenzie's thoughts and asked if he could please consult with him as to what the best plan would be. I also had probably my biggest melt-down since I was pregnant with Maddy (can I blame pregnancy hormones again?) As a parent, I just want what is best for Maddy and sometimes it is hard to know exactly what that is. Our spinal team here are very good at what they do and they are highly specialised in the spine and in scoliosis. They don't, however, have a great amount of experience in diastrophic dysplasia. Dr Mackenzie on the other hand has maybe more experience than anyone in diastrophic dysplasia - however he deals with the whole body - spine, feet, knees, hips... I figure that if these two experts can communicate together we'd have the best of both.

Ultimately, though, Dr Mackenzie is not our doctor - he is just consulting with our doctors here. And if they (for whatever reason) choose not to avail themselves of his expertise, we cannot force them to communicate with him. I think that our doctor here may try to contact him though - I sincerely hope that he does.

After a few days and a lot of thinking, I've realised though that we still have time to figure this out. As much as I'd like to know the plan right now, the simple fact is this is still up in the air. As for casting, knowing that it will not really help her main curve that much makes it less urgent to me - I am happy for now to leave that alone.

Maddy may or may not have a hemivertebra. The CT scan definitely would help to clear that up so I think if these two experts cannot agree, we would be foolish not to proceed with the CT scan. As to what that shows and what the outcome will be there, we'll figure that out later. "Wait and see" - that seems to be the story of our life!

Tuesday, October 1, 2013

My thoughts on the TVB Pearl documentary

Last night, our family sat around the TV, popcorn in hand, eagerly awaiting for 8pm to come around so that we could see Maddy on The Pearl Report. It was an honour to be involved in this documentary and I think it was pretty cool how it aired on the eve of Dwarfism Awareness Month (October). 

The show is available online on the Pearl Report webpage here (for a month or so only), or on youtube, linked below in two parts. 

As the show started, I began to cringe at a lot of the terminology being used. "Wheelchair-bound", Lana being "normal", my "fetus"? "The painful choices they make to live normally". Even in my education degree, as we studied inclusive education, we were taught about terminology which victimises those with disabilities or differences and terminology which is neutral. It's not just about being "politically correct", it's about what these terms imply... I would have thought that the media would have had more awareness about such issues - but maybe it's just Hong Kong. Here, doctors still use the word "retarded" instead of "has an intellectual disability".

Most people who use a wheelchair are not "bound" by it - instead their chair gives them freedom of movement they would not have without it. They use a wheelchair to gain mobility and independence - it is a wonderful thing, not a "prison". 

In addition, using terms like "normal" imply that kids like Maddy and Nathan are "abnormal" when nothing could be further from the truth - they are in every way as normal, boring and even average as any other kid their age, they just have one little difference which makes them stand out. Many times, it is the first thing someone would notice about them - but in terms of their entire lives, experiences and personalities, they are far more average than these terms imply. "More alike than different" is a slogan I have heard and love - and using terms that emphasise these differences implies that this is not the case. 

Finally, "fetus"? For a third trimester pregnancy which is both wanted and loved? I heard someone making the point recently about William and Kate's baby - it was never "fetus", even yet unborn, that child was "the future king".  Why not just say "Their third daughter, due in December..." or "Their future child...", something like that?

I did feel that the terminology used did portray (in my opinion) a negative perspective. I was afraid of this in advance and even comment to the producer that I hoped this would not be the case. I didn't want anyone to see this and pity us. 

Looking beyond the terminology, however, I thought that Maddy was gorgeous and exuded with joy and life - which is exactly who she is. I also loved that in the segments that we were involved in, I could feel the common thread of "hope" - from the final part of the first half, talking about hope for the future, to the little "Hope" decoration that was in the background of the video footage inside my home. 

Similarly, I loved the segments about Serene, Dennis and little Nathan (and Maddy was so excited to see her friend on TV as well!). There were worries and challenges discussed, but I loved how his segment ended, with Dennis discussing how Nathan will be able to "stand up to the challenges ahead" with or without drug therapy and interventions. 

A few other minor comments: firstly, I didn't have to travel to the US to see Dr Mackenzie - I was going there for a wedding and figured "why not" since I was already nearby. Secondly, why didn't anyone tell me that my tag was sticking out at physio?? Thirdly, I'm not 34 weeks pregnant - as of the air date, I was 30 weeks. Although I WISH I was 34 weeks! And finally, I asked them not to put any "tummy shots" of the ultrasound on TV - but now my lovely pregnant tummy has been broadcasted all over Hong Kong!!

Watching the show, and knowing all that I know about our experience, Nathan's experience, dwarfism in general, I have to say I didn't think that the 30 minute show even really scraped the top of the iceberg - I wanted to know so much more. I knew there was so much even of our story that was cut - and other parts which were not filmed due to deadlines. I was left wanting to know more.

I have to add though, generally I don't name our doctors and hospitals publicly but since the show has already done it, I have to say that Dr Michael To is one of the best doctors in or out of Hong Kong that we've seen. He's remarkably sensitive and doesn't forget that he is treating real human beings - kids with families, schools and lives to live. In addition, there have been multiple times that I have emailed him with various questions and he has always responded so quickly. It is so rare to find those characteristics anywhere in Hong Kong, even in private clinics let alone the public hospitals. I have a few friends who also see him and have never heard a bad word about him - everyone who has seen him speaks so highly of him. We are so lucky to have him as Maddy's orthopedic doctor!

Thanks TVB Pearl and the doctors and other families involved in the making of this documentary. It was a great and eye-opening experience and I'm so glad we had the chance to be involved in it :)