"Guy is now a happy, healthy and handsome young boy who loves life. This would not have been the case without the Cleft Clinic at Johns Hopkins and we will be forever grateful for their work." — Felicia and Gavin
Felicia and Gavin
It came as a shock to us when Guy was born with a bilateral cleft lip and palate. We were quite unprepared and were overwhelmed with emotions – love for our new baby boy, joy at his arrival, and sadness as we knew he would have a lot to go through in his first years of life. I’d like to tell our story in the form of a timeline as I think that will be of most help if you are in the position we were in when Guy was born. Before I begin though, you should know that Guy is now a happy, healthy and handsome young boy who loves life and whose main difficulty seems to lie in hearing the word ‘no’.
This would not have been the case without the work of the Cleft Clinic at Johns Hopkins and we will be forever grateful for their work. The clinic’s nurse coordinator Kim Seifert brings together specialists from all the areas necessary to provide Guy with the care he needs and maintains lines of communication with caregivers in our local community. So this is what our team looks after from our point of view:
- Kim Seifert, RN: Coordinates it all
- Dr. Richard Redett: Guy’s smile and palate
- Dr. Stacey Ishman & Melina Desell, CRNP: Guy’s ears
- Kathy Ferguson, SLP: Guy’s speech (in coordination with local speech therapists)
- Dr. Joseph Seipp and Dental Team: Guy’s teeth (in coordination with local dentists)
- Dr. Gerald Raymond: Guy’s initial genetic evaluation
Birth to One Week Old
Feeding: Before Guy was born, we had planned for him to breastfeed. However, his cleft meant that he could not develop the suction required and our pediatrician quickly helped us and the nursing staff let go of that idea. For the same reason, regular bottles did not work for him. Fortunately, our local hospital had a small supply of Pigeon Nipples. These have a separate valve that enables the baby to lick the nipple instead of having to suck. They worked like a charm and Guy was adding weight within his first 24 hours.
Advice: Our local hospital shared an information packet with us, which listed a number of Cleft Lip/Palate practices. We did not know whether Johns Hopkins was covered by our insurance and asked our pediatrician for advice. He simply said that if Guy were his son, he would want him to be looked after by the best team in the world. We asked him to contact the Hopkins Cleft Clinic which he did that very day, which was a Friday.
On Monday, we received a call from Kim and by Tuesday we had our first consultation with Kim and Dr. Redett. It was very reassuring to be in a place where they work with clefts every day. We saw ‘before’ and ‘after’ pictures, discussed feeding strategies, and came home feeling that we were in good hands. And we had a game plan for the coming year.
Support: It was a huge comfort to us when a colleague contacted us to ask if she could introduce us to her son, who was born with a cleft lip and palate, and who was now a senior in high school. They helped us realize that Guy was going to be just fine and that he would have no memory of the operations he would have in the coming months.
Ten Weeks: Lip Adhesion
The lip adhesion operation closed the clefts in Guy’s lip. The resulting pressure from his lip helped straighten out his top gum, which was still relatively malleable at this age. This proved tremendously effective. For us, it meant arriving at the hospital very early and waiting in the pediatric pre-op room where we met with his anesthesiologist and with Dr. Redett. We were nervous, but the doctors and nurses answered all our questions and let us know what we could expect.
I carried Guy into the operating room and laid him on an operating table that had been specially modified for babies. I kissed him goodbye and told him I would see him soon. Then a nurse walked me back to the waiting room. The operation didn’t take long. We were just finishing a much needed cup of coffee when we were called to the post-op room. Our tiny baby was pale and wan and covered in electrodes and had IV’s in his arm, but most shocking was that his lip was closed. We had come to love his wide piratical grin and we suddenly missed that piece of him. Being in the post-op room was itself quite an experience and we were astounded by the quality of the people who worked with us to manage Guy’s coming around and relieve his pain.
After one night in the hospital it was back home with the ‘no-no’s – little blue arm restraints to keep Guy from touching his lip while it healed.
Immediately after the lip adhesion, Guy’s mouth was a small tight ‘o’ shape, but over the next few weeks the skin stretched and became more supple as it put pressure on the gum line beneath. During this time, he started at Day Care where we had to train his caregivers on how to put the Pigeon Nipple together. They had never seen a baby with a cleft and were hugely helpful and supportive to us as well as being great caregivers for Guy.
Six Months: Final Surgery for the Lip and Nose
Dr. Redett performed the final surgery on Guy’s lip and nose and brought everything together beautifully. Guy now has a straight nose and symmetrical lips with the upper one having two small scars running parallel between his lip and the center of his nose.
This surgery took a little longer – the nurses had told us that Dr. Redett was a perfectionist. We were quite happy to wait! When Guy came to post-op, his mouth was tiny! The two parallel scars were bright red and tight up against each other. It took several months for them to gradually fade and for his mouth to take its final shape.Guy also had stents placed in his nose during the surgery and these required a follow-up visit for Kim to remove them.
Nine Months: Palate Closure and Ear Tubes
This was the big one. Guy also received tubes in his ear to help with fluid drainage. Several hours in the operating room followed by several days recovering in hospital and some nervous moments once we got home. But the results were worth it. Guy’s palate is complete – you can see a neat scar going all the way back into his mouth – and the flap at the back of his throat, which is key to his speech, is mended. He has new ear tubes after growing out of the tiny ones he had as a baby.
In our consultations with Dr. Redett before the surgery, we had learned that this would be a more intense experience than the two previous surgeries, so we were prepared to stay for a few days at the hospital as Guy recovered. The surgery went beautifully as did the post-op care. But I want to spend a moment to thank the nurses who looked after us during our time on the pediatric ward. Because his mouth was sore for the first few days after surgery, he was fed intravenously and he received pain medication. His nurses were outstanding in every way. They were always able to empathize and engage with him, even at 4 am when he had woken up and removed his IV.
Dr. Redett, Kim, and the nursing staff let us know that the first day or two back home would be challenging as Guy would have to use his mouth for eating, drinking and medication despite the pain. Each hour had its challenges, but by the end of the first day home he was able to drink a little and take his pain medication. Over the course of the operation and recovery he had lost over 10% of his weight. Needless to say, as he recovered, so did his appetite and no one could accuse him of being undernourished anymore!
One Year Old and Onwards: The Work of the Clnic
While surgery is crucial and makes such a dramatic difference, much of the care Guy needs is ongoing. His hearing needs to be regularly tested as he can develop hearing losses through the buildup of fluid in his ears. He also needs ongoing speech therapy. In the future, he will need various kinds of specialized dental work. The Cleft Clinic is the focal point for all the experts looking after Guy’s progress.
At his first Cleft Clinic, Alicia White tested Guy's hearing and we learned he had some slight hearing loss due to the buildup of fluid in his ears. Dr. Ishman helped us understand the pros and cons of putting in a new set of drainage tubes and we decided to put them in to avoid ear infections and loss of hearing.
We also met with Kathy Ferguson, who helped us understand the challenges Guy would have learning how to articulate some of the common sounds of speech. She recommended speech therapy and put us in contact with Pennsylvania’s Early Intervention program. We started speech therapy shortly thereafter. This has been invaluable, as Guy needs training in how to use his new palate to make sounds he had not previously been able to make. He is also learning how to control the flow of air through his mouth and nose to make all the different sounds of speech. This is ongoing work and we meet each week with a Speech Therapist as well as working with Guy at home.
The three years since Guy was born have been the best of our lives. We have been humbled knowing that the boy we love has needs we cannot meet by ourselves. We have been moved by the compassion and generosity of everyone who has played a role in his care. And we remain grateful for the skill with which Dr. Redett has mended Guy’s clefts and helped him become the happy, confident and charming boy his is growing up to be.