Mother shares her experience following son’s diagnosis
(This is an excerpt from Paola’s website celebrating her son’s first birthday.)
I remember that Wednesday, it was March 2, 2011. I was 21 weeks pregnant and we were incredibly excited about seeing our little boy on the anatomy ultrasound. When the obstetrician came in to the room and told us that our Marco was looking great, we could not be happier! He showed us each part of his body and mentioned that everything looked perfect. Then, he asked us to look at his face: “This is the baby’s nose and this is his mouth”. He put his closed hand on top of his own nose and mouth. “This is his upper lip: it starts here, ends here and re-starts here … he has a cleft lip”. I can still feel that sensation of falling into an endless hole when I remember that moment. I looked at my husband; I was truly terrified. Luis hugged me very strongly and said that everything would be fine. I cried so much. My baby! Why? What did I do?
After the shock, our approach was to start looking for a solution. Luckily, we live in an area where good medical care is readily accessible. With the help of our friends, we collected very valuable information about the different treatment options. We learned about craniofacial teams: groups of surgeons, nurses, dentists, therapists, and others who work specifically with children who are born with this type of condition. After meeting with several of these teams, were able to make an informed decision about who would be taking care of our baby once he was born.
For months, the only people we told were our parents. I was not ready to receive other people’s reaction to the news before I had elaborated my own reaction. We started calling Marco our “conejo lindo” (we still call him that). A few weeks before the due date, we decided to let the rest of our family and friends know about Marco’s cleft. It was so good to receive all that radiant energy from everybody! By the time Marco was born, we were all ready for him. The moment I saw him and was finally able to hold him, kiss him, and see how beautiful he was, I was finally able to get out of that hole of uncertainty that I had fallen into when I found out about the cleft.
Taking care of any baby is a full-time job and of course taking care of a child with special needs makes everything even harder. We have incredible admiration for the millions of families around the world who lovingly take care of their special-needs children every day. In the case of children with cleft lip and palate, the most intense work involves feeding and a type of therapy called naso-alveolar molding, which is designed to bring the lips and nose together prior to surgery. This therapy is incredibly intense but makes a huge difference in the outcome of surgery. Marco is super strong and took the pre-surgical therapy 24/7. He learned to eat in a different way every week, thrived, and teaches us daily what resilient people are made of. We have also had our wonderful family and incredible friends, who have been there every day. Marco had his nose and lip repaired when he was 13 weeks old. The results were incredible and today, people can’t tell he was born with a cleft lip. His palate was repaired 5 days ago, and once again, Marco, despite the pain and discomfort, is already smiling and eating!
Why aren’t there more stories like Marco’s?
Marco’s story has been a success, but it has taken an incredible amount of time, love, dedication and, inevitably, money. It has also involved the work of a dedicated craniofacial team that includes a pediatric plastic and craniofacial surgeon, Dr. John Teichgraeber, and two pediatric orthodontists with expertise in naso-alveolar molding, Drs. Regina Lewis and Bhavini Acharya. The tough reality is that most children around the world and even here in the United States don’t have access to the kind of care that Marco has had. If they did, there could be many more stories like Marco’s.
Paola and Luis