"Your baby ("our son" I interjected) - Your son has a cleft lip and palate." is the basis of what I remember. It appeared complete on the left side (complete meaning it runs from the lip through the palate and nostril) and incomplete on the right (the nostril and palate are intact, but the lip has a cleft). My knowledge of clefts at that time ran about as deep as the Operation Smile commercials - showcasing impoverished, grown children with severely malformed facial features. I could feel my heart beating in my stomach as he continued on about our increased risk of genetic syndromes, some of which are "not compatible with life". A vast majority of clefts are isolated birth defects (meaning there are no other associated health concerns), but he was encouraging us to move forward with the amnio to rule out the possibility that our child may be suffering from something more serious.
The next part of our conversation centered around the amnio procedure itself. I wanted 100% of the facts before I (once again) officially declined the procedure. For those of you not fully versed on pregnancy terminology, an amniocentesis is a prenatal test that involves a skilled doctor inserting a very large needle into your abdomen and through your uterus to extract amniotic fluid (i.e., your "water"). The fluid contains the baby's DNA, so it can be tested with 99.9% accuracy for genetic disorders. Sounds great, right? Until you read the fine print. The procedure carries a small risk of miscarriage, as it can weaken your amniotic sac causing it to burst, which would then require delivery of the baby at an age too premature to survive.
The answer for us was as plain as day. In no realm of this universe were we willing to risk our child's life because of a "finding" that in all likelihood was completely cosmetic. The odds of our child having a cleft were lower than the risks associated with the amnio - so the odds were clearly not in our favor. There wasn't much discussion - it wasn't an option for us. Dr. M (the perinatologist, who we now see every 3 weeks) gave us a 1-5% chance of having a child with a genetic disorder (significantly higher than the 1 in 10,000 my previous tests had indicated...) - so now we would just have to wait out the next 4 months to see which statistic we would satisfy.
In the meantime, our lives will be, and have been, filled with doctor's appointments, research, and more doctor's appointments. We consider ourselves extremely lucky to live in "Medical Mecca" as Dr.M put it. With access to the nation's most skilled surgeons (Children's National, Georgetown, Johns Hopkins, etc) not only are we guaranteed amazing care, we even have options. We were able to hand pick from the best of the best, and we're confident that our son will be in skilled and caring hands. We've had several follow-up scans and the doctors have been unable to find any other "markers" that our son is suffering from anything other than the cleft. In other words, he looks perfect. We aren't being naive, and know we still have a risk, but we are extremely hopeful and optimistic that our son's cleft is isolated and once corrected, will live a fulfilling, normal life.
Assuming our son is born healthy and without complication, he will be seen by the craniofacial team within the first couple weeks of his birth. The plastic surgeon, oral surgeon, speech pathologist, orthodontist, ontorologist, and pediatrician will decide together the timeline for correction. He will most likely be fitted for an orthodontic device that he will wear until he is ready for surgery - most likely no sooner than 12 weeks of age. The device will help close the cleft naturally, allowing for a more natural looking repair. His lip will be corrected first, then several months later (sometime before his 1st birthday) his palate. He will need anywhere between 1 and 3 subsequent surgeries throughout his childhood and teen years to "perfect" the repair as he grows. We have a long road ahead of us, but we are prepared (dare I say excited?) to get the ball rolling and get our son on the path to normalcy. What doesn't kill you makes you stronger, and I know this experience will only strengthen our family and most importantly, our son. I recently just purchased this print for his nautical themed room - it was too perfect to pass up:
I know this information probably comes as quite a surprise to a lot of people, as we have only shared this news with very few individuals. We considered keeping it to ourselves because we don't want anyone seeing us/this pregnancy/our son as any different than before. This doesn't change who our son is to us, so we don't want it to change for anyone else. He will not look like Jack, and I know his appearance might be surprising to a lot of people - but he is still our son. Jack's brother. A perfect, amazing gift that we cherish regardless of his birth defect. We are so excited to meet him!!
I sincerely hope there are no hurt feelings by our lack of sharing. Please understand that the last couple of months have been a roller coaster for our family and we needed time to get our feet firmly planted back on the ground before letting anyone else in. We are eternally grateful for the support we receive on a daily basis from our friends and family and I know our son will be too. We truly couldn't have a better support system.
I'll leave you with the most clear image we currently have of our sweet boy's face (who I get to see on a pretty regular basis these days.... silver lining...) You can see his cleft extending from his lip to his left nostril - the grayish looking space. Not the best picture, but gives an idea of what we're dealing with.
Less than 10 weeks to go!! Please keep baby Hawkins in your prayers :)
