Our Stories - Cleft L&P

Cleft Lip and Palate Patient Before SurgeryOne of our mothers was kind enough to share her experience with her son’s palate surgery. Here is part of her story.

On the night of Sean’s birth we were told our son had been born with a mild cleft of the soft palate. We were extremely fortunate that Sean’s cleft palate was minor enough that it did not impact his eating or sucking capabilities, to the extent that he was even able to nurse, which we have since learned is quite rare.

We had such a hard time with the idea of our little boy having to go through a surgery and then the much discussed, long, recovery. Surgery day at nine and a half months for our son finally came on the 30th of July, scheduled for 7:30 a.m.

It is now just over 3 weeks since Sean’s surgery and I can share that our little boy is completely back to being our very active, cheery, jabbering ten month old. The surgery and recovery were definitely some of the roughest days. We took Sean into GBMC at 6 am. We checked in and read a few books. Sean did amazingly well for a baby who hadn’t eaten since his bottle at 8 the night before. At around 7 the nurse called us back to get Sean. They provided us a little gown to change him into for the procedure. My husband and I tried to keep all emotions in check in order to not upset Sean, but we were both rather stressed and worried about the unknown that was around the corner. It was then time, a nurse from the surgical team came out with a nice warm blanket to take Sean back. We kissed him goodbye and then waited two and half hours. The surgeon came back and provided some feedback on how things went. Within a few moments of the surgeon leaving we were called back to help with Sean’s waking from the anesthesia. As a parent, this was the hardest part of the entire process. I heard a baby crying, but because of the surgery it didn’t even sound like our son. He was clearly struggling with waking up and with the IV, monitoring devices, and the no-no's on his arms. It was tremendously hard to see our son this way and equally hard trying to figure out how to comfort him. Our eyes were filled with tears as we just wanted to take away any discomfort and make him feel better. With some singing and rocking he settled down and fell off to sleep.

After moving to a recovery room, we settled in for the overnight stay. The pediatric nurses were wonderful! As soon as we arrived in the pediatric unit the nurses said the focus was to make sure Sean was not in any pain, which as a parent, is all you want. The first few hours Sean remained on morphine which made him very tired and rather passive. For the rest of the day and night we managed his pain and got him transitioned from the morphine to Tylenol with codeine. Around midnight, we got a 4 hour break from the vital checks and Sean slept well being constantly rocked by one of us or a grandparent. 24 hours after surgery we could see little signs of our son returning to himself. He would sit on the hospital bed for the reading of a favorite book. Then we heard our little boy say mamma and laugh. It meant the world to us and let us know that he was going to be ok. Getting him to eat was a challenge. He was hungry, and so we fed him when his pain meds were working the best and he was able to eat. By 5pm the day after surgery we were discharged and headed home, exhausted, a little hesitant about the unknown ahead of us, but thrilled to be out of the hospital. The next three days were rough with little sleep, but overall things went well. We then used regular Tylenol for the rest of the week. Feedings continued to be a challenge, but we figured out that Sean liked “milkshakes” made from his formula and yogurt. A week past the surgery and Sean was amazing. We were back to a normal sleep routine (as normal as can be for a baby his age) and things seemed almost back to normal other then the no-nos and liquid diet. We had our follow up checkup 10 days after the surgery and everything was great. He remained on the liquid diet until a full 2 weeks after the surgery as well as kept the no-nos on for precaution. Two weeks after surgery everything had returned to pre-surgery days. He was healed and we were on our way to the beach for a family vacation.

Overall the surgery and recovery went as the doctors had explained. Improvement was seen each hour and each day thereafter making life easier and easier. I can’t share how much family help was important in the recovery. Sleep is very disrupted and limited the first few days, so having some help is key to your health and stamina. We had success with a product called snuggle wraps instead of the hospital supplied no-nos. They are designed a little differently so Sean did not mind the limited arm mobility during play (also a great help with limiting sand consumption at the beach). We also found drinking out of a soft thick rimmed cup the first few days was better than the hard plastic. We also noticed Sean started to snore after the surgery but as the time has passed, the snoring also diminished. Finally, the great team at GBMC made the ordeal that much better. Seeing Susan Strickland’s friendly face in recovery in a sea of unfamiliar doctors and nurses brought comfort to us that was particularly needed after surgery. Everyone from the doctors to the pediatric nurses had amazing patience with all our concerns and questions while taking such excellent care of Sean.




Cleft Lip and Palate Patient Before SurgeryKevin's Experience with the GBMC Cleft Lip and Palate Team has been nothing but positive.

Our son, Kevin, was born on April 8, 2004 following an uneventful pregnancy. Much to our surprise, Kevin was born with a cleft palate. My younger brother was born with a cleft lip and palate so my husband and I were familiar with the defect. Knowing what we faced as a family helped soften the blow. However, we still had concerns regarding surgeries, speech issues, hearing problems common to cleft-affected children and feeding difficulties.

Within 24 hours of his birth, Dr. Kline and Dr. Capone came to our hospital room to discuss Kevin's treatment plan. Both doctors put us at ease as much as possible during these early days with Kevin.

Team social workers also came in to meet with us.Kevin did initially have problems drinking from a bottle. We tried several different bottles, nipples, and feeding positions. Kevin had numerous weight checks in his first few weeks of life as he ate slowly and little and was not gaining weight as quickly as he should. Through a process of trial and error we found the bottle that worked best for him. Additionally, Kevin had recurrent ear infections. We expected him to get ear tubes at about 6 months, but after several ear infections, a problem frequently faced by children with cleft palate, Dr. Capone recommended placing the tubes earlier. Taking my baby in for surgery, even a minor procedure, was emotional and scary, but Dr. Capone once again put us at ease and was on hand in recovery to answer any questions we may have had. Kevin's ear infections stopped and he did very well in the months leading up to his palate repair.

Cleft Lip and Palate Patient After SurgeryGenerally, palate closure is done around the first birthday. We requested the surgery be performed closer to 11 months to allow Kevin sufficient time to heal prior to his first birthday so he could enjoy cake and ice cream at his party. Dr. Capone accommodated that request and Kevin had his palate repair surgery at 11 months.

A much longer and complicated surgery than the tube placement, this was a hard day for us. As we waited during the 3 ½ hour long surgery, we were given frequent updates and brought to the recovery room as soon as possible. Again, Dr. Capone, the team, and the hospital pediatric nurses, were wonderful.

During the healing process, Kevin had to wear arm restraints for several weeks and be on a liquid diet. It was difficult, but he thrived and has not needed additional surgeries to date.

Kevin received in-home speech therapy for two and a half years through a county agency in Pennsylvania. He continues to have annual check-ups with the team, which include examinations by specialists in  audiology, speech and language pathology, nutrition, social work, pediatric oral maxillofacial and facial plastic surgery, otolaryngology, pediatric medicine and genetics. Being able to visit with all of the specialists involved in Kevin's care in one location on the same day is great.

With the exception of some minor speech issues, Kevin is doing very well. He is a typical little boy who loves playing with his friends, going to pre-school and playing soccer. Dr. Capone and the team have always been accessible and more than helpful. Their support has been invaluable. It has played a huge role in how well Kevin has fared in spite of his birth defect.

 

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