October is dwarfism awareness month and I'd like to take the opportunity to continue sharing our story and writing about something I feel I know a little about: at the moment that is caring for babies (I say "know", but I am mostly winging it just like everyone else). Elis is our third child in 4 years and the first person with restricted growth in our family.
I'm by no means an expert on Achondroplasia or children, but I can describe some of the new things we've been faced with due to Elis' achon that we didn't worry about with his two average height (the preferred term to use when referring to those who aren't of short stature: AH abbreviated) sisters. When we were given his diagnosis we were given a long lists of "do's & don't's" & told to expect him to hit his physical milestones much later than average height babies, there should be no cognitive delays however. Despite this list (that felt very daunting when I was overwhelmed by all the other bits of new information I was gathering) it has been, to be perfectly honest, pretty much the same. You take it day by day & try to deal with your baby's needs as and when they arise.
Achondroplasia is the most common of over 200 types of dwarfism (restricted growth), averaging at 1 in 25,000 babies born with it and 80% of those are born to AH parents. Because it's the most common its health problems are best known. I'll share some of our personal experiences to give you an idea what it's been like. I'll also add that so far our journey has been a lot smoother than I had ever dreamt when I worried about Elis before his birth. The unknown was incredibly scary, reading about all these things that may cause him bother in life didn't always help (like there isn't enough in the world to worry about when it comes to your children!).
Hydrocephalus (water on the brain) is a common occurrence, the excess water puts pressure on the brain and if left untreated can be fatal. Because we knew about Elis' achon already before birth he got sent for a MRI scan when he was less than 24hrs old (it came back fine). They will however keep a continued eye on him as the build up can happen at any time.
They are also prone to Tharocolumbar Kyphosis & Scoliosis (abnormal curvature of the spine) + Spinal Stenosis (narrowing of spinal canal, the compression can cause pain, numbness & loss of feeling) the best preventative they've found is delaying sitting and being in an upright position for as long as possible while giving them lots of time on their tummies to help them strengthen their core muscles as much as possible to aid a better posture long term, however this does not always guarantee there won't be problems as their spine is by nature more fragile than the average person's, many have decompression surgery and restricted movement is possible.
Needing to remain lying down longer means that most baby rockers are off limits, I believe there are a few that can lie flat however we just ended up using our Scottish Baby Box all the more instead or having him on blankets on the floor. Baby carriers are also a big no-no, especially as they force their spine into a C-shape, something you want to avoid any other time you carry them as well. This one, worried me loads with regards to how we'd cope with a third baby. Both our girls spent a lot of time in carriers, it's how I survived a lot of the first 4 years of motherhood. It often made travelling easier, definitely dog walks, housework and of course simply getting them to sleep, it even saved us money on a double pram when we had a newborn and a 26 month old. So I wasn't sure how we'd manage, we really enjoy being outdoors and spend a lot of free time going out for long walks in the countryside with our kids, we've taken them everywhere but now are somewhat limited to paths where we can take a pram. (In fairness that has all been a lot easier to adapt to than I thought to begin with, although I did recently invest in a good off road pram). To further help their backs their prams need to recline fully & remain in that position, basically you want to do everything possible to keep them horizontal for as long as possible. As they usually have larger than average heads this makes it extra difficult for them to gain strong head and neck control, only adding to the necessity of helping them build strong back muscles more at their own pace.
Ear & Breathing problems are also common and monitored regularly: kids with achon are prone to sleep apnea, often helped by removal of tonsil and adenoids. Needing extra oxygen supplies doesn't seem uncommon either from posts I've seen, neither are hearing issues & ear infections, often caused by glue ear and mostly treated with grommets.
Elis has checked out fine so far, we've had a sleep study and hearing checks but he'll soon have repeats of both and in the meantime we need to keep an eye on him and seek help if we think any of the above are concerning us. There are also regular check ups with paediatrics, increased visits from our health visitor, appointments with physiotherapists and occupational therapists that look at the equipment we need to help with things like bathing and eating (later on they'll help adapt the home & school environments to make them more accessible). We've also got referrals to other specialists, because the best way to give him a good chance of continued good health is to keep monitoring and trying to catch anything before it becomes an issue.
I was so scared before Elis' birth of all of these things, I still am, but now he's here we can face anything together. One of the best pieces of advice I got during that month was from another mum who has a daughter with achondroplasia: "You will be bombarded with medical information at one point. Don't think about any of that yet. Just enjoy the rest of your pregnancy."
I worried about things like "how will I cuddle him without worrying about his back?" and "what about feeding?". Part of me felt so guilty any time I cuddled him as a newborn; we found a nice way to interact was to have him lie flat on our lap, looking up at us. As he grew stronger he grew to prefer lying on his tummy so he could watch his sisters. And I try to recline as much as possible for feeds but I'm sure I'll always worry that I'm not doing enough.
As I mentioned earlier, we were told to expect him to reach physical milestones later than his AH sisters - with it being our third baby, I won't lie, we thought that was kind of handy! But, apart from sitting, he's done everything earlier than his sisters much to our surprise. He loves to prove people wrong already it seems, most of all I think he's eager to join in with his sisters' chaos.
Elis teaches us every day that you don't need to be defined by "labels" in life. It's not that he or other short stature people can't do what taller people can, they just need to do things differently sometimes - now to me that's a beautiful gift that breeds creativity. We need embrace each others differences; colour, gender, sexual preferences, size and "disabilities", because they make the world a far more interesting place. And so caring for a baby with achon is mostly the same as any other baby, in other words a completely unique experience; because I can safely say all three of our babies have been and are so different from one another.
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