Mom struggles to nurse her newborn diagnosed with Cystic Fibrosis by Linda McIsaac

I always had a strong desire to breastfeed. My daughter was born four years ago and after many tears, I decided to switch to formula only five days after she was born. I wish I knew then what I know now!

When I found out I was pregnant again in February 1997, I knew that I wanted to breastfeed. I did not know, however, what I would be up against.

My son was born on October 23, 1998 weighing 8lb. 3 oz. I was one week overdue and had to be induced. Induction was not agreeing with my baby (his oxygen level was not as it should), and an emergency Cesarean section had to be performed. Shortly following the birth, we were informed that our son had a distended abdomen, difficulties breathing, and two dislocated hips.

As my parents and daughter arrived to visit this new addition, we were told that he had to be transferred to a children's hospital for further investigation. It was then we decided to have him baptized. My daughter and parents didn't get to see him.

When we visited the neonatal intensive care unit to have him baptized, he was on a ventilator and numerous other IV's and tubes. I was terrified. I was experiencing so many emotions. Will he survive? Did I do anything wrong during pregnancy? What about breastfeeding? The only thing I could do was pray that everything would work out.

We were notified by the neonatalogist that Blake would have to undergo emergency surgery at only 8 1/2 hours old. During this surgery a perforated bowel was repaired. The cause: unknown. Due to Blake's condition, he was unable to feed. I was encouraged, however, to express my milk by using an electric double pump (15-20 minutes every 2-3 hours) and freeze it. I did struggle with the pump during my stay in the hospital. It was extremely difficult traveling from one hospital to another after having a Cesarean section, and I think the stress level had an effect on the amount of milk (or lack thereof) I was producing.

I could not hold or feed my son. The only thing I could do for him was prepare to provide him with the best nourishment possible. The first thing I did following my discharge was rent a double pump. For days and days I continued to pump with only a picture of my son (hooked up to medication equipment) close to me. Oh, how I was longing to hold him!

Ten days following Blake's surgery, we were informed his condition was not improving, and another surgery had to be performed. This time he came out with a colostomy. My world starting falling apart as I saw that hole in the side of my helpless baby, even though I knew it was for his benefit.

Three days after the colostomy, we received a call from a doctor who I will always hold dear in my heart. She wanted to know what time we were going to be at the hospital as the results from some blood work were back. Shortly after our arrival, we were taken to a private office. It was there we were told that a diagnosis was made on our son's condition - he had Cystic Fibrosis (CF). So many emotions were expressed - sadness, fear, anxiety and, believe it or not, relief. We now knew the cause and things started to look up. Now, he would get his nourishment from his mommy (still hooked up to monitors & IV's). They started to tube (NG) feed him a little breastmilk, and as he tolerated more and more he was put to my breast. He did not breastfeed well though. I don't think he knew what to do, neither did I. I always thought it was a natural instinct. I guess he was physically and emotionally weak after all he went through, and I was exhausted physically and emotionally. After a few days, I started to feel this was not going to work.

Due to the difficulties Blake had with his digestive system, I had to offer him the best nourishment possible. I continued to try and try again. The pumping was becoming easier as my milk production was increasing (probably because I was closer to my son, spending long days at his bed), but the breastfeeding was slow. I had difficulty getting Blake to latch on and if he did he would either fall back to seep, fuss tremendously, and/or start choking. The help I needed was not available at this hospital. The nursing staff was either overworked or not qualified to assist me. Finally, I contacted a lactation consultant.

The lactation consultant felt that not only was Blake having difficulty in latching on he was also having difficulty in coordinating his suck/swallow; therefore, an occupational therapist was consulted. As Blake was being NG tube fed when I was unable to breastfeed, it was recommended that the nursing staff bottle-feed him my breastmilk using the Medella Orthodontic nipple. I was unable to be there 24 hours a day as my daughter, Deidre, needed me and I was still recovering from the C-section.

I wanted to spend more time with my daughter as her behavior was beginning to change. I tried to be home for supper and would then rush back to the hospital to nurse my son. On one occasion I rushed out of my home, leaving my daughter upset, at approximately 6:40 p.m. to make it for a 7:30 p.m. feeding (we were 25 minutes away). My husband and I arrived at approximately 7:00 p.m. to find a nurse feeding my son a bottle with an ordinary nipple. I was devastated. My daughter was put on hold, once again, because I had to try and nurse my son. Why was I not consulted? They knew I was planning to be there, and it was unusual for Blake to wake so ravishing that he had to be bottle-fed. I questioned the reasoning but received no comfort. Once again, I approached my lactation consultant. I wanted to know what to do. She gave me some helpful advice and suggested that I still hang in there and continue breastfeeding.

Blake was not gaining weight either, so the doctors recommended adding formula to my breastmilk when he was being bottle or NG tube fed. At this point, I was strongly considering to discontinue the breastfeeding. Perhaps bottle-feeding would make things easier and he would get him home faster. The lactation consultant recommended the Supplemental Nursing System in the early stages to get him more interested in breastfeeding (getting him to latch). It was also helpful in supplementing Blake's feeds.

Finally, with a lot of patience and persistence, the support of my lactation consultant and Blake getting stronger, he was latching on and feeding well. The health care team decided that now the NG tube should come out and that I should spend 24 to 48 hours with Blake strictly breastfeeding. If this rooming in was working out we could take Blake home. Even though Blake wasn't gaining weight as hoped, he was discharged on December 6, 1997. We were to take him to the Cystic Fibrosis clinic one week later to have him weighed. I was so proud to find out that he had a significant weight gain even though he was not being supplemented. Everyone was delighted with the progress we were making.

Blake is now six months old and has two teeth. He's gaining slow but steady. I've now started him on solids but he's still breastfeeding. He has to take enzymes with everything he eats, a vitamin supplement once a day and we have to perform chest physiotherapy daily due to Cystic Fibrosis. His two dislocated hips are improving, and it is hoped that he will be without his harness/brace by the time he is seven months old.

I'd be a fool to say that breastfeeding was easy for me. I had many obstacles to overcome - a CF child, latching difficulties, problems sucking/swallowing, positioning difficulties (Blake was in a hip harness and now a brace), a blocked duct, and a bite. When Blake is nursing now, and looking up at me however, a feeling comes over me that's hard to describe. I don't know if it's a feeling of accomplishment, but I do know it's something every mom should experience and cherish.