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This one is about: Breastfeeding After Cleft Lip Repair Surgery

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Breast Feeding After Lip Repair Surgery:

By Chanda Chapman

I am a Mother. I love saying that. “I am a Mother… of a beautiful boy with a wonderful soul.” His name is Nathan, and as his namesake states, he IS a gift from God in my eyes.

It just so happens that my son also was born with a cleft.  He had a bilateral cleft of the lip and of the pre-maxilla, however his palate was fully intact. And as important as it was to me to deliver my son using the Bradley Method of childbirth, it was also my deepest hope to be able to breast feed my baby. The exhaustion of a 23-hour delivery and the surprise of my baby’s cleft did not deter me from following through with my desire to develop that immediate bond between mother and baby. So…there on the delivery table we laid together and we tried to begin breastfeeding. Our bond was immediate, however the breastfeeding success was not. No matter, we laid there for some time… comfortably warm, and happy to try again later.

Over the next couple of days, while Nathan and I roomed together in the hospital, I insisted that breastfeeding be the only feeding method allowed unless a doctor should want to discuss a need to do otherwise. I felt very lucky to be in a hospital where the staff was very encouraging and respectful of my wishes. I discovered that I simply needed to figure out a way to assist Nathan to latch on.  After some trial and error, we found our method. Nathan’s cleft went further up into his left nostril than it did on the right side. In fact, there was a small hole in that nostril down into his mouth as well. This meant that his breastfeeding was most successful while laying on his left side facing me. In that position, my breast would cover the hole and allow him to get the suction necessary to breastfeed.  To keep my breast in the necessary position for him, I needed to hold the back of his head with my left hand and my breast with my right hand. Thus, a Boppy pillow was a Godsend! Without some sort of pillow supporting his body, it would have been very difficult to keep him in position because my hands were already occupied.

In order to have successful latch on for both of my breasts, it was necessary to keep him on his left side no matter which breast we were using. Thus, for feeding on my left breast, I found that I needed to place him in the “football” position.  Again this also required that I hold his head with my left hand and my breast with the right hand.

*Sigh*… so, we found our method, we were successful at it, and Nathan began to gain weight without ANY difficulty! He was and is still a breastfed baby, I am happy to say. 

During his first few weeks of life, we went to a few different doctors and then to our first visit to the Cleft Team at the University of Chicago. Although you feel like you’re somewhat on parade, they were a very good group of people. We were told that we should expect to have Nathan’s first surgery when he turned three months old. The thought was that he would have a lip repair surgery at three months, possible rhinoplasty in his toddler years, possible further lip repair and rhinoplasty in adolescence, and possible bone grafting for the upper jaw in his teens after the permanent teeth come in. All of this news was very shocking to my husband and I. It was hard for us to imagine putting our beautiful baby through so much medical treatment and so early. But we bucked ourselves up, and we began to read everything we could get our hands on regarding clefts and surgeries, etc. etc. etc. It was SO helpful to find the Wide Smiles website! To read other people’s accounts and see the wonderful photo gallery was extremely reassuring! The only real topic that I could find nothing about anywhere, though, was breastfeeding. It was apparently so rare for a cleft child to be able to breastfeed that there was only one article that I could find of a mother’s account of how she did it. That article was and is still on the Wide Smiles site, and I highly recommend it!

Our cleft team recommended that Nathan not receive any bottles or pacifiers or anything else to suck on except for the breast prior to surgery. They told us that one of the most important things post surgery would be to try to keep Nathan from crying. So they suggested that as long as Nathan was happy with the breast and looked to it for comfort, that it would be very good therapy directly after surgery. The breast tissue is soft and would require less pursing of the lips to suckle than may be required for bottles or pacifiers, etc. They prepared us for the fact that even the breast may be too much for Nathan right after surgery, though, and that he may need to be fed through a syringe for a short while.

So, of course, after these recommendations it was not a question for us whether or not we would solely breastfeed up through the surgery. However, one of my burning questions was, “What would it be like to breast feed after the lip repair surgery? What could I expect?” And no matter where I looked, I could not find any account of a post surgery breastfeeding experience. I was anxious about it all, but we all made it through the surgery and our post-surgery breastfeeding was a success as well. I can understand perhaps why there are no post-surgery articles about breastfeeding, however. At that time, and shortly thereafter you are naturally very busy with your baby and the follow up care. And then… after that, you are just so happy with the results and how wonderfully your baby goes on with his life, you find it hard to make the time to write everything down. In fact, it has taken me almost one and a half years to get pen to paper. But I feel it is important for others to know about the possibilities that are out there and about the amazing resilience of our babies.

On Nathan’s three-month birthday, we started for the hospital at about 7am. Nathan had not eaten since before midnight, and was getting quite hungry. Since he was not allowed any pacifiers prior to surgery, that was not an option. However, over the past couple of weeks, he had developed a liking for gumming and sucking on my finger, held horizontally across his mouth. So this soothed him as we drove the hour to the hospital. Once there he was sufficiently amused with the surroundings, and we took him on frequent walks in his stroller while we waited. By about 9am, it was time to prep him for surgery.

We put him in his little hospital gown and booties. It surprised my husband that even at this little size, the hospital gowns were made such that Nathan’s little butt still poked out the back. My husband got quite a laugh at that. He had always thought it was just that he was such a big guy, but apparently it’s a conspiracy within the hospital gown manufacturing industry. Nevermind…

Anyhow, after a bit of time, we were brought into a room to meet with the anesthesiologist, and the two surgeons. We had, of course, met one of the surgeons before, however on that day he had another with him that was an intern. We had not been prepared for that and felt uncomfortable with the idea that an intern might use this surgery for practice. We understood that the doctors need to learn somewhere, but we didn’t want it to be with our baby. Without time to let the idea gel, I simply stated to the surgeons that it was no comment on his abilities, but that I did not want Nathan’s surgery to be performed by the intern. (The intern was, however, the person that conducted almost all of the follow up visits, and I would have to say that we feel very certain now that he is an extremely capable doctor. If we had it to do over again we would not have placed our limitation upon the surgery. The cleft clinic should have prepared us for the situation, though, by having the intern be a part of Nathan’s pre-surgery clinic visits, giving us an opportunity to get to know the intern and get a feel for his understanding of cleft care.) We were also a bit leery of the anesthesiologist and asked him a number of questions about his experience and about the details of what they would be doing with our son. We made sure that he planned to be present for the entire surgery, as we had heard of other occasions where the head anesthesiologist would leave someone else to monitor the surgery after the patient was set up. He assured us that he would be present from start to finish.

Well, after our discussion which lasted all of fifteen minutes, they told us they were ready to get started and asked me to hand over my baby. “What?! Now?” I thought. Oh - that was one of the hardest things I have done in my life. My baby had not been out of arms reach of me for more than an hour since he was born, and these people whom I had just met were asking me to hand him over so that they could perform medical procedures on him that had the possibility, however remote, of being fatal…or at least painful. “Were we doing the right thing?  Nathan is beautiful to us as he is… does he really need this surgery? Is he going to be frightened? Where are they taking him? Why can’t I be there with him?” All these thoughts came rushing to me at that moment…and then you hand your baby to the doctor…who smiles and tries to giggle with your baby to show you that everything will be just fine, and then once they take him out through the double doors and out of your sight, you turn and bury your face into your husband’s chest and cry from the fear of this unknown…

After four hours that seemed like eternity, we finally got the report that Nathan was out of surgery and was in post-op. We were told that we would be able to see him in another hour or so once he was in the recovery room. So we went to the hall outside that room and waited and waited until we were told we could suit up and go in to see him. My husband and I got into the gowns, caps and booties, and were brought into the recovery room, where our first view was of our baby in a metal hospital crib with the sides down, IV tubes strapped to his foot, leads coming from everywhere as if he had sprouted roots, and an oxygen mask strapped to his head, misting over his face. He was swollen from retained fluids, and had a Logan’s Bow over his lip area. (The Logan’s Bow is a small metal horse-shoe shaped thing that is glued to the cheeks such that the horse-shoe part is up over the surgery site, the object being to reduce tension on the sutures.)  His little mouth looked so tightly sewn, it looked like it must have been very painful. But he lay there, still asleep from the anesthesia, and he seemed oddly peaceful. As a parent you feel like you want to rip off all the tubes and apparatus and pick your baby up in your arms to hold him as close as you can for as long as you can. But you wait and you watch, so that you are there by his side as he wakes up, so that he sees your loving face and feels your loving touch caress him in this strange place.

As Nathan’s grandparents had lived through this day with us there at the hospital, my husband and I took turns leaving the recovery room so that they could suit up one at a time to go in and see their grandson. After another hour or so, it was decided that Nathan was now able to go to his room. So they gathered up all his tubes, etc. and we slowly walked out of the recovery room, and through the hospital to the children’s ward and into his room which we called home for the next two days. That was about 7pm. Nathan’s grandparents left shortly thereafter. Then it was time for my husband and I to simply wait by Nathan’s side, watching all the numbers and graphs on the medical machinery, looking at his sleeping face, stroking his hands and forehead – until he finally started coming out of his slumber at about midnight that night. The anesthesiologist checked up on Nathan a little earlier and told us he seemed to be doing fine. Since we had never been through anything like this before, it was nice to have that reassurance. But one of the hardest things that evening was not being able to pick Nathan up to hold him as he woke up in that strange bed and with what I would expect was a very strange feeling in his mouth.

Nathan did not cry at this stage. Although within a short while he did show signs of hunger. We first gave him some breast milk (that I had pumped throughout that day) via a small rubbery tube on the end of a syringe. This was welcomed by him, but by daybreak he was getting frustrated with the syringe and so we thought we would see if he wanted the breast itself. So then with a nurse’s assistance we figured out how to get him out of the bed and onto my lap. Our next obstacle was figuring out how to get the breast to his mouth with the Logan’s bow in the way.

I found myself feeling clumsy as I tried to offer the breast at just the right angle.   Nathan then seemed to take over, though; Logan’s Bow or no Logan’s Bow! He tried to take my breast into his mouth, and he made it work for a short while. It seemed to soothe him, and we found it amazing that he was breastfeeding in less than 24 hours after surgery. During this first day after surgery, Nathan breast fed in short spells a number of times, but was fed just as many times with the rubber tubed syringe. By the second day he increased the number the breast feedings over syringe feedings. He seemed to get frustrated with the syringe and was quite happy to fall asleep at my breast instead.

The doctors visited a few times to check the sutures and show us how to apply the salve and clean the site. They said things looked very good and that it was extremely important to keep the site moist with the salve to help avoid scarring.  They seemed very encouraged by Nathan’s breastfeeding activity. We asked if there was anything we could do to get the Logan’s Bow into a position that would allow for easier breast feeding, though, because in its current position it seemed to make things a little difficult for Nathan. We thought that having the Logan’s Bow slightly higher on Nathan’s face, just below the base of his nose, would be just as effective at relieving the tension on the surgery site, and the doctor’s agreed. Once we moved the Logan’s Bow, the breastfeeding was much less difficult and Nathan seemed much happier about it all.

During those first couple of days after the surgery, we occupied Nathan’s waking hours by playing his favorite music softly in the background, talking to him, singing songs, caressing him and looking through favorite books. We had to keep a very close eye on his arm restraints, as he had figured out how to wriggle out of them within the first day. It became very apparent when it was time for Nathan’s next dose of Tylenol, as he would begin to get very fussy right at the four-hour mark. This was very hard for my husband and I at times, because we knew our baby was in pain. Usually offering the breast was enough to quiet and soothe him until we could get his next dose of pain reliever. But sometimes singing songs softly and pacing around the room with him was all we could do to help until the Tylenol would kick in.

On the second day after surgery, it was finally time for the IV to be removed from Nathan’s foot. Neither my husband nor I realized how painful that would be for Nathan. Whether it was the particular nurse or what, we are not sure – but Nathan was extremely unhappy as the IV was being removed. I had him on my lap and when he began to show signs of pain it made me quite upset and it seemed to me that the Nurse was taking an unusually long time to get it out.  When it was over, however, breastfeeding offered Nathan immediate comfort and helped him stop crying.

As Nathan was used to feeding on his left side, we continued to use the football position for feeding from my left breast and the cradle position for feeding from my right. Each of these positions were modified slightly, however, to accommodate the arm restraints. We found that Nathan needed to have his little arms straight out, rather like airplane wings, while he fed. If we tried to tuck his arms down, the arm restraints were too bulky and would keep him too far away from the breast to latch on. So basically, when he was feeding from the left breast, his left arm was out straight along my belly, and I continued to give him support by holding his head and back with my left arm. And when he was feeding from the right breast, his left arm was going straight back under my right arm.  Again, I continued to give him support by holding him with my left arm. Within a couple of days after the surgery, however, it was no longer necessary for me to hold my breast with my right hand, as Nathan was now able to latch on all by himself with his new lip.

We were told prior to the surgery that the first two weeks after surgery would be the hardest and that as soon as the two weeks were up, everything would be fine. No truer words were ever spoken! My husband and I wondered how on earth we would get through this time. Those first two weeks were VERY hard.  We felt it necessary to keep a 24 hour watch over Nathan because we found he was wriggling out of the arm restraints no matter how we tried to rig them, and his little hands would go straight for his face. After figuring out first of all, how to pick him up with the restraints on, then how to lay him on our shoulder without bumping the Logan’s Bow or his lip, we started coming up with ways to keep Nathan from being upset. When the breast was not helpful, we found that walking around singing softly and repetitively or taking a stroller ride around the house or around the block was very successful.

My husband and I were absolutely exhausted during those first two weeks. Both of us had little sleep and when we did sleep it was very light because we’d awaken at any movement from Nathan. Even when he had the arm restraints on, his uncertain movements as a three-month-old baby would sometimes cause one of those bulky restraints to bump the Logan’s Bow, which would of course be painful as it jarred the suture site.

Through it all, though, there were good moments as well. Within the first few days we saw our baby trying to smile with his new mouth. With each day, the surgery site looked like it was healing more and more. Nathan’s painful episodes slowly became shorter and shorter. And the bond between my husband and myself became stronger. We found that we were there for each other and there for our son together. When I was unable to comfort Nathan, my husband would take over and Nathan would suddenly find Daddy’s rendition of “Sittin’ on the Dock of the Bay” the MOST soothing sound. And when my husband was unable to comfort Nathan, I would take over and Nathan would suddenly find my singing or my breast most soothing. There was not a single time where one of us was unable to soothe Nathan within a couple of minutes, but the whole time involved much stamina and patience. And when the two-week time period was up, miraculously everything was easier and we had resumed a rather normal life.

We took Nathan for his check ups and the doctors requested that we keep using the arm restraints for an extra week. We were bummed about that, because we knew it was so frustrating for Nathan, but we followed their advice. The day the restraints came off, we celebrated by going for a walk in the stroller at a nearby state park. Nathan was very happy that day!

And in the end, all of our hard work during those first two weeks paid off. Only one stitch came loose, at the very base of Nathan’s nose. The doctors said they were amazed at how well his lip had healed. Whether that had to do with the breastfeeding, nobody can be certain. But it definitely had to do with how diligent we were at immediately comforting Nathan whenever he needed it, avoiding the tension that crying places on the surgery site. In addition, the doctors said that during the surgery they were able to lengthen Nathan’s columella and that it was quite possible that he would never need rhinoplasty in the future. What wonderful news to our ears! The less future surgeries are necessary, the better!!

Nathan and I developed a new breastfeeding routine, and he eventually fed in the cradle position on both sides. Our breastfeeding relationship continues today, although now it is basically just a bedtime thing, after he has been away from me for an extended time, or when he is sick. Breastfeeding has been a wonderful bonding experience between us as well as a very good tool, particularly when Nathan has been ill and has needed to keep his fluids up. If it is at all possible for the readers of this article to breastfeed your babies, I highly recommend it!

God be with you and your babies! You will survive these times, and your babies will be resilient! Trust in that.

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