World Breastfeeding Week: Patience and Persistence

by CBB Reader Deborah Minner, mother of Aidan, 3, and Sean, 2

I’ve always thought those two words sum up the key to my successful breastfeeding experiences. I never realized how much patience I had until my first son was born, but as a stubborn, red-headed, middle child, Aries, I knew I had plenty of persistence in my personality! I had planned on breastfeeding for at least a year per child before I even got pregnant, thanks to the support of my younger sister and mother-in-law. They both had breastfed their sons that long and I knew I could count on their support when I had children.

Click the extended post to reader Deborah’s story of persistence and patience with breastfeeding her two sons, Sean and Aidan, one of whom has Down’s syndrome. Mothers of children with Down syndrome are often told that the baby will not be successful at breastfeeding and instead are told to bottlefed. It did take her son three months to get the hang of it, but he is almost 2 now and still nursing!

When my first born arrived, my son Aidan Riley, I was eager to start my nursing journey. I had taken a breastfeeding class and read The Womanly Art of Breastfeeding so I was ready. What I didn’t realize was that I had flat nipples and that my newborn would have a hard time latching on to them. He was also classified as having "an uncoordinated suck." I had help from nursing staff for every feeding but made little progress getting him to latch properly. One the second night of his life, the nurse gave us a nipple shield to try and at last I was able to get him to latch by myself. We visited a lactation consultant, a La Leche League leader and attended LLL meetings while I tried to improve Aidan’s latch and encourage my nipples to stretch out. We used breast shells, the SNS, and a breastpump. I was very determined to make breastfeeding a success. We never used bottles, but sat through very long nursing sessions with the shield to make sure Aidan got enough hindmilk. Finally, at 3 months post partum, my nipples had grown and Aidan learned how to latch onto his mother. I ripped up the nipple shield and threw away the shells, I was so happy to finally have my baby at my breast. Aidan will be 4 in November 2006 and he is very much so enjoying nursing still, happy to be child led weaning.

In September 2004, our family was blessed with our second child, our son Sean Patrick, born at 37 weeks gestation after 4 hrs of labor. Since I was still nursing Aidan, I did not expect there to be any difficulty nursing Sean. No sore nipples from lack of use, no clumsy latching from lack of practice, no worry about adequate supply. Afterall, I’m an expert now! Sean was eager to nurse from the moment he arrived, with a perfect latch from the beginning. He nursed and slept, nursed and slept, nursed and slept. Everything seemed just fine, but he did sleep for long stretches between feedings, more than two hours. Then things began to unravel. His glucose levels dropped rapidly, he wasn’t maintaining his body temperature, he had an irregular heart rhythm, the nurses tried over 30 times to do his hearing screen and couldn’t get it to properly work. My doctor ran an EKG, took a chest x-ray, started an IV line into to my 6 lb 4 oz baby for glucose and called the Children’s Hospital to ask for advice. They told him that it sounded like Sean just had some "early term/rapid birth" irregularities and that it should all even out within a week. We took our newborn home and charted his intake/output for several days. The doctor wanted to follow up after a couple of days and discovered Sean was jaundice. We went home with a biliblanket to use and had to bring him back every other day to watch his bilirubin levels. He was on the blanket for a week, 24 hrs a day. He continued to latch and breastfeed thru this, but was so tired and didn’t wake to feed easily. He was slowly gaining weight so we didn’t worry too much about the frequency. After a week on the biliblanket, he developed thrush and so did I. We treated it and hoped that was the last of our troubles. Yet still, he would tire easily during his feedings, and milk would run out the side of his mouth. I made an appointment with the lactation consultant just so I could have a second opinion.

The morning of my appointment with the lactation consultant, Sean was resting in his cradle after a feeding while I took a shower. My husband, Doug, was laying on the bed next to him when he saw Sean suddenly throw up a large amount of milk and started to gag. Sean aspirated and stopped breathing. Doug ran with him to the bathroom and yelled at me, "He’s not breathing! He’s not breathing!" I opened the shower and saw Sean covered in mucus and milk, turning purple. I jumped out of the shower and began wiping off his face and trying to clear his nose and mouth. I had Doug get the nasal aspirator and I used it to suction out his mouth and tiny nose. After a minute, he was gasping and crying. I held him close and tried to calm him down. He was breathing, but it was very ragged. I got dressed and we took him straight to the doctors office. The receptionist sent us in immediately and the followed quickly. She asked my to undress him and when we did we saw that his hands and feet were purple, his body was mottled and his stomach was very distended. She rushed to get the doctor in. He looked briefly at Sean, then picked him up and said, "We are taking him to the Emergency Room."

Sean was hooked up to oxygen monitors and his saturation levels were very low, dipping into the 70’s when normal in 90% and above. They gave him oxygen and did a chest x-ray. The x-ray showed that his stomach was full of air from the gasping. The doctor admitted Sean to the hospital to monitor and kept an oxygen tube in his nose. An IV was started to keep fluids in him and I had my husband bring my Avent Isis pump for me to use since I wasn’t able to nurse him. After a couple of hours, the doctor decided to life-flight Sean to the Children’s Hospital so that they could run more extensive tests on him and find out what had caused the aspiration.

Ten minutes after Sean and I arrived at the hospital, I found out why my son had been having so many "little" problems. The ER doctor said, "Has anyone mentioned to you that Sean has physical traits of Down syndrome?" The room spun. I was stunned. I started crying and said "Down syndrome? What are you talking about? NO! He doesn’t have Down syndrome, he just spit up really bad." The doctor then calmly and gently showed me three characteristics of Down syndrome that Sean had and said that they would do a blood test to confirm it, but it was highly unlikely that Sean did not have it. He gave me a handout on newborns with Down syndrome. As I read though it I saw "difficulty breastfeeding, difficulty maintaining suction resulting in milk leaking from mouth" amongst several other things that we had been through in the 3 short weeks of his life.

By this time, my husband and mother arrived, they drove the 3 hrs to the hospital while my in-laws watched our older son. I broke the news to them and Sean was admitted to the hospital so they could run the tests required on infants with Down syndrome. Over the next 3 days, we had mostly good news about his diagnosis. He didn’t have any major health complications caused by Down syndrome. His hearing was fine, his digestive system had developed properly and he just had a small hole in his heart, called an ASD, that wouldn’t require surgery or medication. His oxygen levels finally evened out and he was given a prescription for acid reflux control to help prevent future aspiration episodes. Through his stay, I was given use of the hospital breastpump to keep up my supply and give expressed breastmilk to Sean in bottles. He was hooked up to so many monitors that nursing him was too difficult and the doctors wanted to watch his intake to make sure he was adequately feeding orally. I met with the lactation consultant after Sean was
finally "wireless" so that she could watch us latch and feed and offer her advice. She was very reassuring about our nursing relationship and said words I longed to hear, "You two are a beautiful nursing couple! You are doing everything right for him and he is going to be just fine." She said I could nurse, pump, bottle fed for awhile until he had time to grow more and get stronger. She said that tandem nursing was going to be a big help in Sean’s breastfeeding because my toddler could help maintain my supply better than just the pump.

We followed this advice for 3 months until Sean finally was strong enough to latch, nurse a full feed without leaking and drain the breast completely when he was 4 months old. I went to work part time when Sean 2 months old and Sean went to work with me until he was 6 months old. I pumped milk for him to have at daycare until he was 22 months old. Yes, that’s right, 22 months old. Sean will be two soon and still nurses frequently.

The breastfeeding bond with both of my sons is so strong and amazing. I love our relationship together and am so happy that I was able to find the patience and persistence needed to give my sons their breastmilk birth right.

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