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Clare's Story

Teresa Rouillard
Manchester NH USA
From NEW BEGINNINGS, Vol. 24 No. 1, January-February 2007, pp. 14-16

I successfully breastfed my first child, Jamie, until he self-weaned at 17 months old. I loved my breastfeeding relationship with my son. When I was pregnant with my second child, I fully expected to embark on the same breastfeeding journey with her and eagerly anticipated it. Little did I know what was in store for us!

My daughter, Clare (now 14 months old), was born with a rare genetic condition called Williams Syndrome. As a result of having Williams Syndrome, Clare has multiple heart defects. In her first 11 months of life, she underwent four cardiac catheterizations and open-heart surgery to repair some of the defects. Clare also has low muscle tone. From what I know, many babies with Williams Syndrome are not breastfed because low muscle tone and poor oral motor skills result in poor latch on and sucking technique, Thankfully, Clare was not one of those babies and was breastfed from the start.

We did not know of Clare's diagnosis while I was pregnant, so I had no thoughts in my head about whether or not breastfeeding would be possible. Immediately after delivery, I put her to my breast. She knew exactly what to do -- she latched on. Although Clare never had problems latching on, it became clear in those first few weeks that breastfeeding her was not going to be the smooth ride I had envisioned. Due to her low tone and heart defects, Clare's stamina was limited. Her pattern was to suck, swallow, and breathe, sometimes going off and on the breast frequently. When my let-down came, Clare ended up sputtering and choking and would come off the breast completely. Needless to say, breastfeeding was not a tidy business for us!

I spoke to my LLL Leaders and got some great tips about trying different positions, especially when my let-down would occur, to help Clare nurse at her own pace. In many ways, I am so grateful that Clare is my second child, and that I had a wonderful first experience with my son. Otherwise, there were many times during Clare's first weeks that I would most likely have given up breastfeeding. But I knew I could do this -- that we could do this. I loved my blossoming relationship with Clare, and she loved her time with me. From the beginning, Clare refused to supplement breastfeeding with a bottle of my expressed milk. She wanted her milk straight from the source! Over time, Clare's technique improved, she grew stronger, and she was an enthusiastic nurser.

Clare underwent her first cardiac catheterization to correct heart defects at three months old, a second procedure at five months old, and a third at seven months old. During each hospitalization, I felt blessed that I was able to breastfeed her once she awoke from anesthesia. I was grateful that I had stuck with breastfeeding during those trying times earlier in Clare's life. I stayed in the hospital with her the entire time and could nurse her whenever she wanted, day or night. Holding her in my arms and having those blue eyes lock onto mine while nursing was a gift. I knew that after enduring each procedure, I could be there for her and comfort her the way she liked best. I knew that by breastfeeding Clare, I was helping the healing process after each catheterization.

The most agonizing days of my life were after Clare's open-heart surgery in November 2005. Clare was barely over seven months old at the time. She was in the intensive care unit (ICU) for a week following surgery. Due to the high risk of the surgery and some very rocky moments post-surgery, Clare's stay in the ICU was longer than anticipated. She was kept on a breathing tube and ventilator so her little body and heart did not have to work so hard by breathing on its own. She was on morphine and methadone for pain and given a sedative and paralytic so she would not move and her body could heal. She received proteins, carbohydrates, and other nutrients via an IV in her neck. Once Clare was removed from the ventilator, she continued on pain medication; she would have to be weaned off it slowly so she did not go through withdrawal. Clare was groggy and unhappy. I wanted to nurse her as soon as possible. The hospital was extremely accommodating and supportive of my breastfeeding. I was provided unlimited access to hospital pumps for maintaining my supply, and all that I pumped was frozen for future use, if needed. I also got two free meals per day -- it is the hospital's policy to give this to all breastfeeding mothers.

It had been a week since I had held my precious baby in my arms, and I could not wait for that moment. Clare, however, could barely nurse. She latched on, but did not have the energy to nurse for long before she came off my breast. She was too weak from surgery, from having the breathing tube down her throat for so long, and from all the medication. She was still hooked up to numerous monitors and medication pumps, plus she still had the central line in her neck, so it was difficult getting her into a comfortable position to nurse. Clare just was not happy to nurse. I was heartbroken. When the ICU nurse said she would heat up one of my bottles of frozen milk, my heart sank, but I understood. Clare receiving my milk in whatever form was better than not receiving it at all. However, Clare still had never taken a bottle. I prayed that she would accept this bottle (something I never thought I would want!). Clare refused.

My heart sank even more when the nurse said that if Clare would not breastfeed or take a bottle, the next step was a feeding tube. I hated the thought of the tube. I wanted to fight against it. However, I knew that it was for selfish reasons that I didn't want Clare to be tube-fed. Feeding Clare had always been my privilege as her mother. At seven months old, Clare was still exclusively breastfed. We had waited on introducing solids until she recovered from surgery. I was her only source of nutrition. I had been a little proud before that Clare refused to take a bottle and wanted only me. And now I couldn't even feed her. I agreed to the tube because it was the best for Clare. She needed to be fed to maintain the huge healing process she was undergoing. Clare had a nasogastric tube placed through one of her nostrils into her stomach. I was comforted by the fact that she was going to receive only my milk through the tube. Plus the nurse said that placing the tube in her nose enabled me to continue encouraging Clare to breastfeed as well.

Clare only had to be tube-fed for three days. She was transferred out of the ICU and onto a regular cardiac floor. As the days went on, Clare's breastfeeding grew stronger. She would nurse as long as she could, then receive the remainder of her feeding through her tube. Her feeding tube was removed when it became clear that Clare was nursing adequately and no longer needed any supplementation. It was still a juggling act nursing Clare through all her wires, but I was ecstatic to just be holding her and breastfeeding again. The greatest moment was when we finally arrived home from the hospital. After walking in the door, the first thing I did was sit on my couch and breastfeed Clare. No doctors, no nurses, no wires, no monitors, no tubes -- just Clare and me.

Since her open-heart surgery, Clare underwent her most recent catheterization in March 2006. She made it through with flying colors and hopefully will not need another procedure for six to 12 months. In the meantime, she is enjoying her new adventure into finger foods and self-feeding. At 14 months, our breastfeeding relationship is still going strong. I enjoy every moment of those precious snuggle times together because my baby is growing so fast and she won't be in my arms forever.

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