Spotlight on cleft and craniofacial awareness
For expectant parents, life is typically filled with the joyful anticipation of welcoming their child into the world. Preparations are made for choosing the right crib, stocking the changing table with diapers and wipes, and figuring out how anyone will sleep once the little one comes home. For Amanda, life took an unexpected turn when her 18-week prenatal ultrasound revealed that her baby had a unilateral cleft lip, a birth defect in which a baby's lip does not form properly. The news was a shock, and fear of the unknown filled her mind. But then her obstetrician told Amanda about the Cleft and Craniofacial Center at Shriners Hospitals for Children — Boston. She referred Amanda to the program’s co-director Eric C. Liao, M.D., and assured her that her baby would be in great hands.
Living in the greater Boston area, Amanda knew she had many care options available for her son. But after meeting with Dr. Liao and the team, she knew she had found the perfect fit for her, and most importantly, for her son, Albie. She said the team was wonderful about answering all her questions, and she could tell they truly have a passion for what they do to help children and families.
Two weeks later, a fetal echocardiogram and MRI determined that Albie’s heart was normal and his palate was intact. That set his care plan in motion, with surgery to repair his lip scheduled for when her son turned 6 months old. Amanda met with the team a few times before Albie was born to go over his treatment plan. She was told that he might need to use special bottles at birth, and the nurses helped prepare her for that possibility.
The morning after Albie was born, Dr. Liao came to the hospital to meet him. He was very pleased to see that Albie’s palate was intact as they had suspected, and he said Albie should have little to no issues with feeding. Albie had his unilateral lip repair surgery this past February and has been healing wonderfully. Amanda shared that right now they are on “a wait-and-see plan.” This means watching as his teeth begin to come in to see if he will require any other intervention. Albie has had no issues with feeding, and scarring is so minimal that many people do not even realize he was born with a cleft. She is very pleased with his results.
Amanda describes the experience at the Boston Shriners Hospital as amazing. “It has been seamless from the beginning,” she said. “The entire cleft team has been phenomenal. We get to meet with Albie’s entire care team in one visit, and they are all so attentive and thorough about following up with us, making sure we have everything we need.”
She went on to share that she would tell other parents who are just getting a cleft diagnosis for their child or are starting the treatment journey to just trust the process. “It can be really scary at first,” she added. “There is a lot of information coming at you. Take a breath, don’t be afraid to ask questions, and trust the team you are working with. Everyone is there to help, and you will get through this. Cleft is not something I ever thought I would have to deal with, but I am grateful for it. It makes my child unique and I would never have been introduced to this special community otherwise.”
Amanda knows that the Boston Shriners Hospital is the best place for Albie. Whether it is speech, nutrition or surgery, the staff is always so enthusiastic about his progress and really invested in the outcome of his care. She will never forget waiting in pre-op with Albie and feeling very nervous. The staff was very patient and wanted to make sure she was totally comfortable. They offered reassurance and shared what to expect during the entire process. Amanda described those moments: “We were lucky to have a visit from a music therapist and she was so sweet, asking what songs l liked to sing to my son. She sang to him as he went off to the OR and I knew he was in the best possible hands. Those small gestures can make a world of difference to someone, and I am so grateful for such a wonderful experience.”
Photo above left courtesy of Eva Nicholas Photography.
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