Today is Ethan’s 4th birthday, and I figured in honor of that it would be a great time to share some of the journey he has been on in those last 4 years with his cleft lip and palate. I hope this will shed some light on our journey of having a baby born with a cleft lip and cleft palate. Hopefully this can be some encouragement or guidance for them, and help educate others.
When we first found out we were pregnant with Ethan, Jake and I were overjoyed to be blessed enough to add a 7th member to our family. My pregnancy wasn’t to bad, until they did a glucose test and found out I had developed gestational diabetes. I started seeing a high risk specialist to manage my sugars and continued working with them through the rest of my pregnancy.
At first altering my diet was enough, but as time went on it wasn’t enough so I started taking the pills to continue to keep the sugars down. Because of the high sugar levels the high risk specialists did regular monthly ultrasounds to keep an eye on babies growth and development.
At one of my last ultra sounds the technician said to me, his hands are in the way and I can’t see his upper lip very good. Now have you I thought it was a little weird for them to say that since I have been in for many ultrasounds before and baby’s hands are near their mouth a lot, never has anyone said anything about it. Me and Jake talked about it and we just blew it off.
As the pregnancy continued my sugars became harder and harder to control with the pills, and it finally got to the point they wanted to do an amniocentesis to check for lung maturity to induce labor before I needed to start using insulin and he got to big.
They wanted one last ultra sound that day to do measurements and then planned the amnio the next day. During the ultra sound the technician left the room to go show the doctor the photos just as they always do. But she came back with the doctor, who proceeded to tell me that they were quite sure that our baby had a cleft lip. There was no way to tell the extent of the cleft lip, or anything else about the internal anatomy in his mouth until he was born.
The following day we headed back down to the high risk specialist and they did the amnio, it came back his lungs were mature which meant they would induce labor. In the last 24 hours me being the person I am started researching everything I could about cleft lip and palate to be the most prepared I could be in dealing with a whole new area I was completely unfamiliar with.
My delivery went good, Ethan was born, and weighed 7lbs 4oz, after the doctors checked him out, it was decided that he had the unilateral cleft lip (cleft lip on only 1 side) and a partial cleft palate (meaning there is a hole in the palate but it doesn’t come all the way to the front through his nose.
During our after birth hospital stay the cleft team came and visited the room at the hospital to take a look at Ethan. They told me we would have to wait about 3 months for his first surgery which would be the cleft lip repair surgery, and for now we just wanted him to be as healthy and as big as he could be. I choose to nurse him despite the fact it was very painful because his latch was not normal due to the cleft lip and palate, and the doctors telling me he would gain weight better if he was bottle fed.
Jake and the kids wanted to help with feedings but a regular bottle wouldn’t work due to his cleft lip. We ended up using a special bottle called a Haberman Feeder, and he was able to be fed by other family members. Let me explain what the Haberman feeder is, it’s a special bottle for babies that have feeding issues. It controls the flow of milk with a valve, this makes it so that the milk cannot flood the babies mouth and choke them. Also the nipple of the bottle is very large which allows the cleft baby to put their mouth on the bottle and the nipple will form around their cleft lip. We were able to get these bottles from the hospital before we left, and then the doctors called in more when we needed them our insurance company luckily covered them for us.
During the 3 months leading up to the Cleft Lip repair Surgery feeding was a struggle, he regularly choked on his milk and also regularly would throw up large amounts of his milk out of his nose. He did better when he was nursed, but that wasn’t always possible to do. We eventually added cereal to his milk and zantac (reflux medicine) to his daily regimen and this helped slightly but not a whole lot. We were told things would improve when he had the cleft lip surgery.
The 3 months went by and he had gained weight great and was approved for surgery. He was scheduled for surgery 8/13/2008.
Pictures the night before his surgery.
Here he is the morning of his Cleft Lip repair surgery waiting in the hospital room.
Here he is sleeping after surgery, which is what he did the rest of that day. The surgery went well, and because of the fact that his cleft lip was only on one side they were able to complete the surgery on the first time.
They stitched his lip on the inside and used a special glue on the outside, which is why his lip looks shiny. He also was supposed to keep arm braces called “no-no’s” on so he wouldn’t accidentally injure the lip at all, but he hated them very much and we just made sure to watch him very carefully and didn’t have any problems.
Here he is ready to go home the day after cleft lip repair surgery.
2 months post op you can barely see the scar where his lip was fixed.
3 months post op.
4 months post op.
Here he is at 6 months post op and you can barely even tell he was born with a cleft lip! His doctor sure did and amazing job! We are lucky to have one of the best craniofacial surgeons around!
Next was deciding if he would need cleft palate surgery as well. Head over to part 2 of the story, Ethan’s Cleft Palate Surgery post to read more!
Ethan has been such a blessing to us, he has helped us grow so much as a parents, and we are so blessed to be his parents! Happy Birthday Ethan!
To read more about Ethan’s journey click here