Research and Answers

It was all I could do to feel productive regarding Lucas's future...I researched...Like everyday. I found other blogs, plain Google searches and images, and medical journals and websites. I looked into the best treatment options and surgeons near and far. When we finally did meet with our cleft team at SHANDS in Gainesville, Fl they were almost annoyed with how much I knew and questioned them...Especially the surgeon . She would look at me like "really? You are questioning my residency and before and after pictures?" Ha! Yes darling, this is my baby and I want THE best ;) Anyway, overall we are very pleased and in good hands with this team. Did you know there are only a handful of cleft teams in Florida despite its prevalence? And each of them offer different pre-surgical procedures. Jacksonville does taping only, Tampa does the Lathem device, and Gainesville does the NAM device. I looked up the pros and cons of all and medical journal research to make our decision. Convenience of Gainesville is obviously a perk, but what's even better is that thier practices are the best according to current evidence based information. So, how lucky were we? The best in Florida takes our insurance, is only 2 hours away, and a previous resident has just opened her practice down the street from our house Andrews capable and willing to make his device. The NAM device would need weekly adjustments so instead of driving to Gainesville each week or more, we get to drive down the street! More about his device later...For now, again we wait until birth to know the extent of his cleft and whether or not palate was involved. Below are some of the 4D US pictures.

The Anatomy scan at 20 weeks

We were so excited to find out boy or girl! In the back of our minds we were concerned for our baby's health during the scan, but honestly didn't worry too much since we had healthy Max and I had an unremarkable first trimester. The US tech smeared the cold gel on my growing belly and the first thing I saw was that we were having another boy! I looked at Jens and giggled "it's another boy!!" We were excited for Max to have a brother! When some time passed after she said healthy heart, stomach, spine, brain, etc I started to wonder what she was inspecting. Finally she said "I think he has a cleft lip." I went silent. I didn't really know what that meant for us but when I think of cleft lip, I picture those poor children on operation smile commercials from third world countries. How could this have happened to our child? I did everything you are supposed to do when pregnant yet we had a child with a birth defect?! I was silent until we got to my exam room. When the door closed and it was just us I looked at Jens and lost it. I just didn't understand and immediately started blaming myself. I didn't take enough vitamins I thought, those 2-4-1 margaritas I had two days before finding out I as pregnant. I just didn't get it! After much research and assurance from my doctors I learn that the cause of isolated cleft lipsare unknown. There are lots of theories...genetics, age, vitamin deficiencies, timing, diabetes, even medications and substance abuse/smoking. However the majority of the time, there is no reason. It just happens. Well...Fast forward to the nextday after many tears and fears we had an ultrasound with the specialist to confirm cleft and talk about other tests to assure this was an isolated cleft and not some sort of syndrome. Fun fact: over 200 genetic syndromes include cleft lip/palate as a symptom. The most concerning Trisomy 18. Thankfully that ultrasound and following blood work went well and he was perfectly healthy at this point except the cleft. "What now" I thought. While pregnant there really is nothing you can do except research all the trials you may or may not experience and think and worry...And forget it and be excited for your new little one. We did a little of both. So....Now we wait.