Friday, June 25, 2010

Being Prepared

When I was pregnant with Lana, I wasn't too concerned about how my mothering skills would be - I benefited from having a sister 16 years younger than me and could remember what it was like having a newborn in the house. I had lots of experience with poopy nappies (or diapers for all you Americans), bath time, putting a baby to sleep, vomit in bed, etc. I had no false illusions about what motherhood would be like - and when Lana was born, I found that it was even easier than I expected. Lana was such a good baby - she fed really well, was never sick, slept pretty well... I think I've had it easy!! 

Now that I'm pregnant with my second, I'm finding that it's in this pregnancy that my fears and insecurities of my own inadequacies of mothering are coming up. I have no idea what it's like to parent a child with special needs. Everything seems so much more complicated and I have had no experience in that area.

One of the things that I've been thankful for in this pregnancy is that the prenatal testing and diagnosis of skeletal dysplasia has given us the opportunity to research and to prepare ourselves for the differences of this child. I'm thankful that we found out earlier in the pregnancy and that I've had time to process my feelings about it all. I think it's probably much easier to process while you're still pregnant than if you found out when the baby was born with no warning at all. However the flip side of that is, while we can research, we can't really "practice" what we're learning. And while I know a lot about potential issues that our daughter may have and what we should do in those situations, I don't even know yet which issues are relevant to our child.

One of the issues I've been specifically concerned about is cleft palate. This is something that occurs in about 30-40% of babies with Diastrophic Dysplasia (although it's usually just the palate, not the lip as well - so cosmetically it's not as bad). I asked the doctors to try and look on ultrasound and the lip is definitely not cleft, and the palate doesn't appear to be cleft - but it can be quite hard to see that on ultrasound so there are no guarantees. I would like to breastfeed if possible, but cleft palate can make that very difficult. And if that was the only issue a mother was facing, there are things that you can do to breastfeed a baby with cleft palate - however I think that with our baby, there are so many other issues as well that I don't know if I'd be able to dedicate the time and energy to exclusively pump if it came to that. I have brochures from La Leche League giving tips on breastfeeding a baby with cleft palate so regardless of if we face this issue or not, I do want to give it a sincere try... 

Another issue that I'm concerned about is called "cervical kyphosis" which also is quite common in diastrophic dysplasia. This is where the curve in the neck area of the spine is not correct and it can result in neck instability. This means that the baby needs to be held much more carefully for much longer than a baby without this condition. It also means that it may not be safe for the baby to be carried in a baby carrier and she may need a pram which is more supportive for the back/neck. Getting around with two kids in Hong Kong is hard enough as it is - and Lana's not really old enough to just walk around all day while I push the baby in a pram. The easiest way to get around with two kids over here is to have the baby in a carrier and push the older one in a stroller. I really don't know how I will manage if I can't use a carrier - but I guess we will cross that bridge if/when we get to it... hopefully we will be able to figure out some kind of option where I can carry the baby in SOME kind of carrier/sling... but ultimately, the safety of the bub is our priority and even if it means that we can't get out as much, or I've just gotta take one kid out at a time, we'll manage. Thankfully we do have a helper now so we have a baby sitter on hand most of the time, if we need to do that. 

So if you are a praying person, please help me pray for these two specific issues. There are other issues that may affect us later on - but these two things are the two that I am most immediately concerned about. 

I also want to thank Stacey once again for her help and support throughout my pregnancy, answering so many questions that I've had about diastrophic dysplasia and parenting. One thing that she said to me in a recent email really meant a lot. She said:
I'm a worrier.  I worry about everything, and when Grant was born I was completely overwhelmed...until I realized that Grant was just a baby, like any other baby.  He had special needs, but I learned those needs quickly, and he was very good at telling me what he needed, even before doctors knew what he needed.  So trust those motherly instincts, and try not to worry as much as I did!  It won't take long for you to be surprised by how normal it all feels. :o)

I still feel less "prepared" and "ready" for this child than I did with Lana... everything is still so foreign to me - I've never been in this situation before and it's hard to really imagine what it will be like when you haven't been there yet. But I do know that we will learn, we will cope - and I even think we'll do a pretty good job, once we figure it all out!


  1. I haven't finished reading your post yet, I stopped at the "cleft palate" part. I was born with a partial cleft palate. I would be more then happy to share my experience and even ask my mom for more information about what it was like for her if you would like for me too.

  2. Nicole, I found out about Nathan having Achondroplasia the last 3 weeks of my pregnancy. I too did research. I always say, "I put my armor on!" I felt that I was going to put up a fight for my child to get what he needs. Nate is 2 1/2 and mostly only dealt with doctors so far. I've switched pediatricians until I found one I like who would work with us. Other than that we deal with one thing at a time. Support groups and blogs have been wonderful since they share so much information that is helpful. I think that you are doing great! I think that facing other people about his differences will be the hardest part as a mom.