Saturday, September 7, 2013

The Start of Our Cleft Journey

Two more weeks. That's how long I have until my due date arrives, and I am so excited and anxious to meet our little peanut, who will have the sweetest little smile. I'm pregnant with my second child, and I cannot believe how fast the time has flown! In general, this pregnancy was much like my first: I was blessed to be spared many of the uglier side effects of pregnancy both times around - no morning sickness, no swelling or bloating, practically all of my weight gain isolated to my belly, and overall just feeling great throughout the whole pregnancy. However, in another aspect this pregnancy has been the polar opposite from my first: during our 20 week ultrasound, we found out that this baby has a bilateral cleft lip and likely palate.

I had gone to this appointment alone, and was so excited to see pictures of the baby that the thought never even crossed my mind that there could be anything wrong. The visit itself was pretty normal, and although I noticed the sonographer spent a bit of time taking various face and head shots, I really didn't think much of it and she didn't say anything to me otherwise. Then she went to get the doctor to review the pictures, and when the doctor came in to speak with me, I knew right away something was wrong (the doctors never come in if everything looks good). She told me they could see a bilateral cleft lip on the ultrasound, meaning a cleft below both nostrils where the lip failed to fuse together during development, and that it looked like the palate was involved as well. She stressed, though, that everything else looked perfect, so she suspected that this was an isolated issue (sometimes clefts can be associated with other birth defects and syndromes). She told me we needed to make an appointment with the Genetic Counselor (who luckily is in the same office) to discuss the circumstances in more detail and determine the appropriate course of treatment. I was stunned. A cleft? A genetic counselor? How can this be? I called Buddy, my husband, from the exam room because I knew I wouldn't be able to wait until I could see him in person, and after I shared the news we both cried together. The news devastated me and immediately started a flow of emotions and questions about how this could happen - I wondered "why me; why my baby?" and even hoped that maybe they were wrong.

The rest of the week was a roller coaster of emotions and doctors visits. We made an appointment to see the genetic counselor the next day, and at that appointment we were asked tons of questions about our family history (we have zero history of clefts on either side), what medications I had taken (just something for hypothyroidism), whether I smoked or drank while pregnant (no and no), whether I had been taking folic acid before and during my pregnancy (yes), etc. Basically nothing to point to the cause of the cleft. Then the counselor offered us the option to have an amniocentesis to check for any other genetic disorders (since as I mentioned earlier sometimes clefts can be associated with bigger issues or syndromes), to which my immediate response was no. However, Buddy and I discussed it more that night and decided to go through with the testing after all - we knew that it would not change whether or not we kept the baby (believe it or not, we were told we had until 24 weeks to terminate a pregnancy - really??!), but we wanted to know if there was anything else wrong so we could properly prepare for what was to come. I had my amnio the next day (it was actually very uneventful, thank goodness). During the amnio, the sonographer did some 3D images of the baby's face, and that was when we first saw the baby's cleft lip - it was clear as day right in front of us, no denying it. So it was real. Here's the picture we got from that visit (they added little hand arrows to point out the clefts):


The first week after receiving the news, I had a very hard time coping and mourned the loss of the "perfect" baby that everyone hopes for. Thank god for Buddy - of course he was upset too, but he was also much more positive and optimistic, encouraging me to be strong and reassuring me that we would get through this together. After that week, especially with the support of Buddy, I knew being sad was not going to do anyone any good, nor would it change anything, so I decided to turn my energy to educating myself on what was to come so that I could be as prepared as possible before the baby's arrival. Even though I was warned not to Google it, I did anyway. Yes, I came across those heart-wrenching images of cleft-affected children who don't get treatment right away, as well as many images of some more severe cleft cases, and those were hard to see. But really, I was able to navigate through all of the information and within a week or so had found the key cleft organization websites that provide very useful information about clefts and their treatment (I'll dedicate some future posts to sharing some of this info), and more importantly I had found some amazing support groups made up of other families who have children with clefts. Through these forums, I was able to connect with other families in similar situations, ask all of my questions and vent about my fears, and see so many encouraging pictures of beautiful babies and children both before and after their surgeries. The amount of support and advice I've found has been incredible - in fact, I don't know where I'd be without it, so I'm immensely grateful.

Fast forward to now, 18 weeks after that ultrasound where we received the diagnosis, and I feel like I am in a completely different place. Yes, I'm nervous about the reality of actually seeing and dealing with the cleft when the baby is born (now that it's only 2 weeks away), but mostly I'm just super excited to meet my baby and enjoy everything that goes along with having a newborn! Sometimes there are difficulties feeding babies with cleft lip/palate, so we are preparing ourselves for a possible NICU stay, but hoping that's not necessary. And thankfully, all of the results from the amnio came back normal, so we are hopeful that the cleft is isolated, but are prepared just in case there is anything else wrong. Now all we can do is wait and see. And so I've decided to start a blog about our journey for a variety of reasons - to document it all so we can reflect years later on what it was like, to help educate others on this very common birth defect, and most importantly, to share our experiences so that it might help other families who are going through the same thing.

So here's to the start of our family's new journey, documenting the story of our beautiful bilateral cleft baby, who I already know will have "the sweetest little smile". I cannot wait to welcome our peanut into this world as part of our family!

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