In Her Own Words

Our story began after a “normal” 20-week sonogram. My OB/GYN insisted on seeing a clearer picture of my baby’s face. It was just routine. I convinced my mother to go along to see her first grandson for the follow-up. The radiologist was very quiet and took lots of pictures, but called in the doctor before giving us the tour of our miracle. The doctor was blunt and said that she thought the baby had a cleft and was possibly missing his chin, but the pictures were not that good. She sent me immediately across the street to see my doctor. I looked at my Mom and said, “But a cleft can be fixed can’t it?” I didn’t know very much about it, but I was sure that it was fixable. I talked to my doctor and pulled out the pictures from my previous sonogram to show her the baby’s chin. My doctor put me in touch with a high-risk specialist for a third sonogram.

This time they got good pictures and were fairly certain that our son had a bilateral cleft lip and palate, but all indications were that everything else was normal. We wanted to learn more. We followed up with an amniocentesis on the spot and waited for two long weeks to get the results on a “rush” request, which confirmed that we were having a boy and that everything else that the test could predict was fine. Now what? The specialist gave us a name of a plastic surgeon that specialized in cleft repairs. We made an appointment to see Dr. Craig Vander Kolk prior to our son’s birth. We wanted to know what to expect. Dr. Vander Kolk walked us through the scenario if our child had a bilateral cleft lip and palate as best he could without knowing exactly what the situation was. Every case is a little different. During this visit, we met Kay who brought in the pictures of her son and shared her story with us. It was reassuring to know that we were not the only ones to go through this.

It was difficult when we were making a registry and everyone kept asking us if we were breast feeding or bottle feeding and why we hadn't bottles or pacifiers on our registry. They figured that we must need some anyway. We were on a mission to find out whatever we could about cleft and pass it on to everyone that we knew so that we were not shocked when the baby was born and neither were our friends or families. After the initial shock and waiting for consultations and test results, we resumed our happy pregnancy state.

Sean was scheduled to be born on October 25th in the 39th week of my pregnancy because he was foot-first breech. He decided to show up early on October 20 and was delivered via c-section. My doctor’s first comment was that Sean was “cute.” The nurse called him “Peanut,” as he was just five pounds 11 ounces. He is cute and I still call him “Peanut.” We were given Haberman bottles in the hospital to feed him. Sean took to these and since he was so small, we were reluctant to try other types. Eventually when we did, he would refuse to eat, so we used the Haberman for 11 months. While our hospital had bottles, I felt we were more prepared than they were. They weren’t sure what information to supply to me. I already had a surgeon, but they did send a nurse who had also been through this to talk with me and she shared pictures of her child. This was reassuring.

We met with Dr. Vander Kolk just days after leaving the hospital and scheduled Sean’s first lip repair surgery for when he was three months old. We were warned that we would miss Sean’s wide smile after this preliminary lip closure.

We were not shy about taking Sean out in public or sending pictures. Most people were very good. I remember a little boy in the restroom with his grandmother looking at Sean while I was changing him and asking what was wrong with his nose. His grandmother said that he had a cleft, a type of “boo boo,” and that he would go to a doctor to have this fixed just like the little boy went to his doctor for his asthma. I thought that this was a great response. The grandmother looked to me for affirmation and I nodded my head and smiled and said, “Yes, that is correct.”

Sean was healthy and he had his first surgery in February of 2001. I am sure that we were more anxious than he was. I took pictures the day before the surgery and he was all smiles. It was hard taking him into the operating room and kissing him goodbye after he was asleep. He didn’t understand what was happening. He woke up in the recovery room cranky from the anesthesia. He wasn’t much of a water or juice drinker, but once we got him calmed down, he was fine. We filled the prescription for the pain medication and only needed it sparingly along with Tylenol. We did miss his wide smile. When we got home we found the Pedi-Wrap website and quickly ordered an extra pair of “no-no’s” like the ones the hospital provided, but in a smaller size. He was so tiny and they didn’t have the right size handy that day at the Outpatient Center. (Usually they do though!) We were glad that we were warned that the lip closure surgery was an interim step. We missed his old smile and the new one wasn’t perfect yet. Sean had found his thumb on Christmas — his best present — and quickly resumed sucking it after he was allowed out of the arm restraints.

Sean grew well and healed fine. His stitches took quite a while to dissolve and we were worried that he would have purple stitches in his lip that wouldn’t dissolve.

At six months old in May, 2001, Sean had the second surgery. This surgery took a little longer. This was the lip-defining surgery and it required an overnight stay. Sean was in the pediatric ward in a corral room with four beds and a nurse in the room. Two of the other beds were filled and another parent spent the night with her daughter as I did with my son. As Sean started to feel better and we were waiting to be released, we went to the playroom for a while. The nurse counted wet diapers and the amount of formula my son drank. When they were satisfied that he was drinking enough and producing enough wet diapers, he was released the next day. This was a nice diversion for all of us.

We learned a few important lessons this go round;

1. Always get the prescription filled prior to leaving the hospital. You can’t find the medication at any pharmacy! My husband had to run to a hospital with a pediatric ward that dispensed it!
2. The tape used for the oxygen mask during the surgery left my son’s chin raw and we put A&D on it to aid in the healing. We were very lucky however because if this had gotten on his lip it could have dissolved the liquid stitches. A resident told us this later as he checked us out before leaving.

Recovery took a little longer, but the smile was well worth it! Sean would cock his thumb and look at it frustrated that he couldn’t get it into his mouth! He resumed this habit once again.

Sean needed PE tubes and would have them put in during his third surgery. He didn’t have ear infections, but the fluid in his middle ear that would not drain was affecting his hearing. This is one reason that they emphasize feeding the baby in an upright position.

The third surgery took place when Sean was 11 months old on September 12, 2001. This surgery was a little more complicated for several reasons. Dr. Vander Kolk planned to perform his procedures of the palate closure, lengthening the collumela on Sean's nose, and sewing together his split uvula. The ENT planned to put PR tubes into Sean's ears. Sean also had an undescended testicle so the urologist planned to perform surgery on that. Sean's surgery had already been rescheduled from two weeks earlier because of a conflict that arose in the surgeons' schedules. I was very nervous with three surgeons' schedules to coordinate. With the events of September 11 just the day before, we were not sure what would happen!

The surgery was delayed two hours because of the events of September 11. Sean had been given a sedative just before we were advised that the start time was being pushed back. We just wanted it to happen at this point. As it turned out, Sean also had a hernia to be repaired by the urologist and a hole in his abdomen to be stitched up. He was hurting after four hours of surgery! We had a semi-private room, where my husband and I both slept with Sean. We took turns holding him all night long. He refused his bottle the next day, but would eat baby food. The nurses and doctors felt that he was getting enough fluid from the food and we were on our way. (This time after filling the prescription first!) Sean’s recovery was the toughest yet, because he had had several procedures done. He gave up his bottle and his thumb, as they didn’t feel the same in his mouth.

Sean received speech therapy (monitoring) from the age of nine to 21 months of age. Today at four, he talks like a five-year-old. I get a kick out of him saying things like, “I would like to try that concept.” His first set of PE tubes came out six months after they were put in and he had a second set put in that have been in place for two plus years. He wears custom earplugs to bathe, shower and swim. It is routine for him.

Sean realized when he was two to two-and-a-half, that he had a “boo boo” when he was born. When I was pregnant with his twin sisters, he spent a lot of time looking at his baby pictures. His album has a picture on the front when he was only two days old. He started to ask why he had a bloody nose. He asks about future surgeries and if his “boo boo” will come back. He likes to play with his “no no’s” and puts them on his stuffed animals. He noticed that he is missing a lateral tooth. I tell him that the dentist will fix this if it is still missing when he is bigger.

Sean is a normal, active, bright, handsome four-year-old. He plays soccer on Saturdays and spends his weekdays writing his letters at pre-school. He has who younger sisters who, while they do not have any clefting, now have PE tubes as well.

Throughout the process, it has helped to be involved in the Maryland Society for Cleft Lip and Palate Children (MSCLPC). The volunteers helped answer my questions throughout the process and now I like doing the same for others. I talk with new parents and send literature and bottles. I talk to nurses area hospitals about the various feeding methods for cleft babies as well. It is a good support network. I have also joined the network for AboutFace, USA.