“A cleft lip!? Oh, but they can fix that very nicely these days, can’t they!?”
Our handsome little boy is now already over two months old
He was born with a complete unilateral cleft lip and palate. I would like to share our story with you and take you along on our journey with hospital visits and Bodhi's development.
In February 2019, we found out that I was pregnant with our second child. On May 11th, just as we had done with our first, we had an appointment for a gender reveal ultrasound with a sonographer. Grandpa would take care of our little girl, and I went with my partner, full of healthy anticipation, to find out if she would be getting a brother or sister. Once there, we were called in. I lay down comfortably and we waited anxiously. He looked a bit, looked some more and then said: 'If I see something, do you want to know?' We looked at each other in surprise and I thought: 'What can he see? Is there something wrong with him? Something with his heart, other organs? Of course, we want to know!' 'Well, look, I can tell by the nose,' the sonographer interrupted my thoughts. The nose? 'Yes, your child has a cleft lip. A cleft palate,' he continued. He looked some more and then said that he saw it very quickly. We didn't know how to react or what to think. A cleft lip? But how can that be? Immediately, that phrase that I would later find so terrible to hear was said: 'But you know, they can do a lot with that these days. They can fix it very nicely,' he said. We didn't even know if it was a boy or girl yet. So he quickly looked further. And what turned out? After this bizarre, admittedly bad news, this visit got a silver lining, because we were going to have a son. After this appointment, we stopped at McDonald's for a coffee to take a moment and recover from this news. It all seemed so unreal. Of course, it's not a life-threatening condition, but still, you don't know what's coming your way and how it will go. Once home, we shared the news with our loved ones, who actually also didn't quite know how to react.
Fortunately, the sonographer immediately contacted our midwife, who in turn immediately contacted the hospital. We were able to get an appointment at our own hospital soon after. It was possible that there were other abnormalities or conditions associated with the cleft. We had a detailed ultrasound done, a GUO, which was comparable to the 20-week scan. Everything looked good, but it was still a bit early (only 16 weeks) so another appointment was scheduled for 19 weeks. What shocked us the most was that the gynecologist asked if we wanted an amniocentesis and whether we would consider terminating the pregnancy if there turned out to be more issues than just the cleft. But we didn't think about it for a second. We didn't want an amniocentesis at all. We wanted to trust that everything looked good. At 19 weeks, we had another very good, beautiful ultrasound.
We were referred to a cleft team at the children's hospital. It's truly amazing that there are entire teams with surgeons, psychologists, social workers, speech therapists, orthodontists, and so on to help us and especially our son. During the pregnancy, we visited the hospital a few times. Where our little guy was examined from head to toe on the ultrasound and where we received more information about what to expect when he was born. We also received a comprehensive information folder to take home. It was very nice to be able to read a bit in it from time to time and thus gather more information about a cleft. Attempts were also made to create 3D ultrasounds. We occasionally caught a glimpse of his lip, but he usually didn't stay still enough and often had his hands in front of his mouth. With each appointment, we learned a little more about the severity of his cleft. It turned out that he had it on one side, that his lip was open up to his nose and he also had a jaw split and a palate split. A complete unilateral cleft. I found this quite difficult. At the beginning, you hope that he will only have a lip split. But it became increasingly clear that he had the 'complete package'. This meant that it wasn't just a matter of closing his lip, but that it would be a process of many years, with multiple surgeries, possibly speech therapy, and other treatments like orthodontics. We will be connected to the hospital until he is 18 years old.
Our little boy will undergo his first surgery on his lip and hard palate when he is about 3 to 6 months old. Before he turns one year old, the rest of the palate will be closed. Around the age of 8 or 9, his jaw will be closed, probably using artificial bone. And who knows if there will be more surgeries to follow. It breaks my heart to know that he will have to go under anesthesia and the knife at such a young age. But there's no other way and we will get through it. Fortunately, we were still able to enjoy this pregnancy. My belly grew nicely, I felt the delightful kicking again, and we tried as best as we could to prepare our daughter for the arrival of her baby brother. The nursery was taken care of and we enjoyed shopping for little boy clothes.
We have chosen to be very open about all of this
In everyday life, in our surroundings and also on social media. It's obviously a visible defect and we absolutely do not want people to be frightened by it or for there to be a taboo surrounding it. Therefore, his birth announcement card also featured a beautiful photo of him, just like his big sister's. Unfortunately, because we are so open about it and simply share it with everyone, we've also often heard that dreaded sentence: 'Oh, but they can fix that quite well these days, right?' and 'You'll hardly notice it later on.' It felt so often as if our feelings about the whole situation were being trivialized. Hello! Our child is born with a congenital defect and will have to undergo multiple surgeries and who knows what kind of treatments. Yes, they can do a lot with it, yes, it will all turn out fine in the end, but we have a long way to go. Yet, this does not take away from the fact that I did enjoy my pregnancy and we are madly in love with our beautiful little boy.
DEBBIE
