We found out that Edmund was going to be born with a cleft lip and palate at our first OB appointment after our anatomy scan on December 7, 2010. I remember the day like it was yesterday. We went to the appointment like any other appointment not expecting to hear anything like this. I remember him asking what we were told at the anatomy scan. We told him about being told we were having a boy and that everything looked great. He then began to talk to us like something was wrong. He stated that Edmund would most likely be born with a cleft lip and palate. There were what felt like 30 minutes of dead silence in the room while he let my H and I process what he had just told us. I honestly didn’t know how to react or what to say. I really just wanted him to speed up the appointment and let me get out of there. I wanted to cry. I really didn’t know what it all entailed. I got home and started researching what it all meant so I could prepare myself for our appointments at UW medical center and Seattle Children’s.
The waiting game started. Trying to get appointments at both places became extremely difficult. We played phone tag for days before I could get an appointment scheduled. We finally got into UW on the 21st of December. We were told by all three of the doctors that did the ultrasound that Edmund would most likely be born with a bilateral cleft lip and palate although they really couldn’t give us a definitive answer because he would never take his hands away from his face to let them get a good look. At this appointment I opted to have an amniocentesis to make sure that there weren’t any other chromosomal issues. All came back great and he was going to be a very healthy baby boy.
Trying to prepare myself for what was to come for the next couple months was hard. We had several more ultrasounds trying to get a good look at his face and never once being able to. At 34 weeks I was put on bed rest for low amniotic fluid and spent the next 7.5 weeks preparing myself for the things to come even more. He was born on April 30, 2011 at 4:24am after only 17 hours of labor and 9 minutes of pushing. He was perfect. He had a complete unilateral cleft lip and bilateral cleft palate.
We met with the nurses and Dr. Birgfeld at Children’s when he was 6 days old. They suggested that we start with the NAM since his gap was 2.5cm. On June 3rd Edmund had an impression of his mouth made to start the NAM process. Dr. Kapadia was awesome. We saw him once a week starting on June 13 to have Edmund’s NAM fitted an then adjusted to help the gap close. We had quite a few difficulties with the NAM. It started out working so well and the cleft was closing on average 2mm a week. Then Edmund had an allergic reaction to the tape used to secure the NAM and we had to have a new one made. We got the new one on our 2nd wedding anniversary, August 15. It worked for a couple weeks and then he had another bad reaction to the tape so we left it out for a day. When we put it back in it caused him to choke. We decided at that time that we couldn’t do it anymore. Neither my husband or I could handle it always tearing his cheeks apart and choking him. We had a long discussion between ourselves and then again between Dr. Kapadia and Dr. Birgfeld and we all came to the agreement that this just wasn’t for us anymore.
Dr. Kapadia looked so defeated when we agreed the NAM wasn’t for us. He was so sure that we could get the cleft closed more. We went from 2.5cm originally to 1cm when we stopped. I was amazed at the difference from beginning. We scheduled surgery for the 7th of October which was just a mere 3.5 weeks away. We couldn’t believe it at first. After 2 surgery dates that were scheduled and cancelled we finally had a date that wasn’t going to change.
October 7th came and we were scared and relieved at the same time. It was hard watching Edmund be so hungry the day of the surgery and not be able to feed him. They took him back to surgery just before 2pm and the waiting began. I was so nervous and so ready all at the same time. I knew I was going to miss his smile but that I would love the new one at the same time. The 3 hours between the time they took him back and the time they called us to tell us that he was headed to recovery felt like forever. We were so relieved that he was done and that he had done great during surgery. We talked with Dr. Birgfeld and he told us what to expect over the next couple days and then we were allowed to head back to his room to wait for him. The next hour felt like an eternity again. We got to see his room mate who had had a similar surgery earlier that day and it was so amazing I couldn’t wait until we go to see him. They brought him to us and I was so happy with his new look.
Our journey is no where near over. We still have a palate repair to look forward to in about 6 months. But I completely trust all of his doctors and am grateful for them every day. They are absolutely amazing to be able to do such great work on someone so small.