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Cleft Lip and Palate

Janet Roberts
Kitty Hawk NC USA
From NEW BEGINNINGS, Vol. 19 No. 3, May-June 2002, p. 88

I was still breastfeeding my two-year-old daughter, Maggie, when I learned I was pregnant with David. My husband and I were both thrilled at the prospect of being parents again. I wondered if my daughter would continue nursing throughout my pregnancy and if we would end up tandem nursing.

Maggie stopped nursing about three months into my pregnancy. This transition was eased for me with the belief that soon I would be nursing my newborn.

During the routine ultrasound midway through my pregnancy, my husband and I received the news that our son had a cleft. The severity of it could not be determined until he was born. This was unnerving, but he appeared healthy otherwise. I began reading all I could about nursing babies with clefts and met with the surgeon who would perform repair surgery shortly after the birth.

David's birth was a beautiful experience. I saw his face, and the cleft was there, but it truly didn't matter. He was beautiful to me. I cuddled him to my skin. After several minutes I did feel inside his mouth, and the cleft extended all the way through his hard and soft palate on the left side. The cleft of the lip extended into his nose. I attempted to nurse him, but we did not manage to find a way for him to maintain suction. I was provided with a pump and expressed colostrum for him.

Since it was a very small amount, I was advised to supplement him with formula until my milk came in. I did this while I was in the hospital, but it made me very sad. Feeding him was very time-consuming. I used a syringe to feed him because I wanted to avoid any nipple confusion. My milk came in two days after his birth. I am pleased to say that, with his first birthday only a week away, he has received only my milk since then.

David had his lip and palate repaired when he was only eight days old. After the surgery, he still would not nurse though he did suck on my finger. In addition to the support of several La Leche League Leaders, I worked with a lactation consultant. With her help and a supplementary nursing system, I was able to get David latched on. She noticed he had a short frenulum and felt that he was having difficulty drawing my nipple into his mouth. We expected clipping the frenulum to be the answer and that he would begin nursing afterward. Instead he became increasingly frustrated with our efforts. Within a week of the clipping, he would stiffen and scream if I merely began to pull him toward my breast. He wouldn't even suck on my finger. I brought him into the bath with me. He became very interested in my nipples and licked them but very quickly would again begin to scream. I decided that for whatever reasons, breastfeeding was a traumatic issue for him. He had had enough trauma in his short life and I could not see adding to it. I felt as though I'd failed and sometimes wondered if I simply hadn't tried hard enough. But my baby was telling me clearly that this simply wasn't for him.

The lactation consultant and speech therapist were both very concerned that he should start to suck on a regular bottle nipple to help develop his facial muscles. I had already switched from the syringe to a Haberman feeder. The Haberman nipple has a vertical slit instead of a hole. He could chomp on the nipple and milk would come out. He was able to suck on a regular nipple, but he would interrupt his sucking with cries. Soon my efforts with the regular bottle nipple became like my efforts at breastfeeding, and I gave in to his protests. He ate exclusively with his Haberman feeder.

When David was five-and-a-half months old, he had a third surgery to close an opening in his palate. The surgeon examined his upper and lower airways to see if he could find any obstructions because David was having a lot of difficulty breathing. The cleft affected the structure of his nose and it had already been operated on once. The surgeon reported to me afterwards that David had been unable to breathe through either nostril. In addition to that, the posterior right side of his tongue had adhered to his palate, apparently following the initial surgery when he was eight days old.

That explained a lot. Before having his frenulum clipped, he enjoyed sucking but seemed unable to draw the nipple into his mouth well. After the frenulum was clipped, his tongue gained a lot of mobility. This allowed the tongue to pull on the palate which must have been uncomfortable; hence the protests during any type of sucking, especially breastfeeding.

Within two weeks of this third surgery, David was sucking on a regular bottle nipple as though he'd been doing it all his life. I'd like to say he took to breastfeeding just as easily. He didn't. He still became tense and cried if I encouraged him onto my breast. So I did not force it. I felt that, again, he'd endured enough.

There was one exception. Early one morning, as I held him close to me and was feeding him his bottle, he simply reached over, latched on, and sucked several times. Then he stopped. He never did it again, but he gave me that one priceless moment.

I am sharing this story because I have a much different perspective on what defines breastfeeding success and failure than I did before David's birth. I regret the fact that he did not nurse at the breast, but this story is a success. For one thing, I am still pumping my milk for David as he approaches his first birthday, so he has received a nutritionally superior start in life. I don't know that I could have done this without the support of my husband, Ted. David is the picture of health. Not only is he walking now, he is running!

This is also a success story because I listened to what my baby was telling me. I wanted him to nurse, and I didn't know why he wouldn't. I was told there was no physical reason that he couldn't. But he told me a different story, and I trusted his version. One of my La Leche League Leaders referred to it as "listening to my intuition." I only hope I can remain open to what my children are telling me, even when it isn't what I want to hear. Thank you, La Leche League, for encouraging this nurturing voice inside me.

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