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Cleft-Craniofacial Community Stories

Joey, Benjamin, and Mathias’ Story

All three of our sons were born with clefts. There is no known history of cleft lip or palate in either my husband’s family or mine. Our oldest son, Joey, was born with a unilateral cleft lip. We were unaware of the defect until the moment he was born. I knew a little about this type of defect and was grateful that his palate was unaffected. My husband, Jim, had had no experience with clefts and was understandably stunned at the sight of his son. Joey was born at 4 a.m. on Superbowl Sunday. By 9 a.m., my mother, a powerhouse, had made contact with several physicians and had the name of the highest regarded plastic surgeon for cleft repair in our state. Several people warned me that breastfeeding could be difficult and I was encouraged to bottle-feed. I wanted to nurse this baby and had enormous success after the visitors went home and I had a few moments alone with this precious fellow and a lactation consultant who supported my efforts to breastfeed.

When Joey was a week old, we visited this talented and caring plastic surgeon. He assured us that as clefts go, this was the simplest to repair. We had the opportunity to view photos of the plastic surgeon’s repairs and saw evidence of the severe clefts some children are born with. Joey had his repair done at the age of two months. He began nursing again about eight hours after his surgery. His lip is absolutely beautiful now. We often remember his comments at age four when he was viewing before and after photos of his lip. He looked up at us and said, “I’m sure glad you had that fixed for me.”


Benjamin

Benjamin was born 17 months later. Since we were told that Joey’s cleft lip was a sporadic congenital birth defect, we were not expecting another child to be born with a cleft. Ben had a beautiful face, a perfect lip, and a seemingly intact palate for which we were grateful. On his second day of life, our pediatrician visited us in the hospital and gave us the startling news that a cleft was indeed present. He suspected Benjamin had been born with a submucous cleft palate, evidenced by a bifid uvula. A submucous cleft affects the muscle above the palate. So, once again we visited our plastic surgeon. He patiently explained the options of repair for this hidden cleft. One of the options presented to us was to wait until Ben was talking. A serious cleft would make his speech sound nasal. Between ages 2 and 3, we visited our plastic surgeon regularly and listened for sounds of nasality. When Ben was four, we were finally given the news we had been praying for, his speech was fine and surgery to repair the cleft was not necessary.

During this period, we had our third son, Mathias. While I was pregnant, I was sent to a perinatal specialist for an in-depth ultrasound. Viewing those grainy images on the screen I saw something that appeared to be a cleft. The technician was non-committal when I asked her if I was seeing a cleft. When the doctor viewed the images he assured me that there did not appear to be a cleft lip present and that an isolated cleft palate was unusual. I was comforted and chalked up my own interpretations to nervousness. What a relief it was to concentrate on my beautiful boys, two at home and one to come.


Mathias

Our precious Mathias was indeed born with bilateral cleft lip and palate. My obstetrician was clearly shaken when he was born, and our normally tranquil pediatrician was undeniably rattled. We were advised that numerous surgeries would be needed to correct his clefts, numbering into double digits. To make matters worse, Mathias was born with a low white blood cell count and had a low oxygen count. He was whisked off to the neonatal intensive care unit. If he had been born without a cleft, I am certain he would have left the hospital a day or two after his birth. I referred to the NICU in jest as “baby jail” and had to ask my pediatrician to go to bat for me to get my baby home. During his stay, a partner of the perinatal specialist who had initially seen me visited us in the hospital. He was incredulous that anyone could have missed seeing the cleft in an ultrasound. I view my lack of awareness as a blessing and am thankful for the months of carefree expectation during my pregnancy.

Our plastic surgeon visited us in the hospital and reassured us with his characteristically matter-of-fact analysis of the work ahead. For me, humor has been a great way to relieve the strain and I jokingly asked him about a volume discount on his medical procedures.

After a week in the hospital, we went home with the services of a wonderful feeding specialist. I tried to breastfeed this new baby of mine. He would suckle at the breast but did not have enough suction to get any milk. We were given the specialized squeeze bottles, elongated nipples and a surgeon’s knife to enlarge the holes in the nipples. Mathias struggled during the first few months of his life with eating; we woke him every two hours to feed him the few cc’s he would take. We even woke him at night for the first month of his life. I kept detailed records of each drop he managed to get down. Being unable to breastfeed, I rented a hospital grade pump and fed him breastmilk for 10 months.

Mathias’ first surgery was at two months of age when his lip was repaired. He had his palate repaired at eight months. After his second surgery, I attempted to breastfeed again, hoping that I could provide him with this beneficial food naturally. Unfortunately, he had developed opposing teeth and had a nasty habit of biting them together to get his milk. It was too painful to continue and I gave up. Mathias has a minimum of three surgeries to go: one to give him cartilage in the column of his nose; and several others for dental work. He has a beautiful face and a “several thousand” dollar smile.


Benjamin, Mathias, Joey

Our boys are 6, 4 & 2 years old now, and are quite aware of their birth defects and seem to be comfortable with our discussions about them. We have learned a great deal about dealing with cleft lip and cleft palate by trial and error. The hardest part in preparing for the surgeries was forcing our babies to abstain from food for many hours before surgery. Caring for them afterwards was difficult, but proactive. There are many tricks we learned to make feeding a baby with cleft palate easier and many products that aided us. I would not trade my gorgeous boys for anything in the world and thank the Lord for blessing me with them and for our plastic surgeon’s talented hands.

Last Updated: Jul 24, 2006