Joys and Challenges
of Parenting a Daughter
with Down Syndrome

Joys and Challenges of Parenting a Daughter with Down Syndrome

Categories: Breastfeeding Today

By Chris Newlon – Illinois, USA

I never fully appreciated the nursing bond until my last child was born. I am the mother of five children with an age span of 16 years from oldest to youngest. The first four babies had completely different nursing styles – the leisure nurser, the barracuda nurser, the sleepy one, and the textbook-style nurser. Each baby presented me with different challenges and La Leche League (LLL) helped me through them all, from allergies to sleeping, to parenting in general. My personal LLL mantra became to follow my instincts and to trust myself.

Surprise!

Chris and Rebecca on her 16th birthday in May of 2019.

Imagine my surprise – not unwanted, just unplanned – when I found myself pregnant at age 42. My friends found plenty to tease me about this but were also very supportive. I felt a little embarrassed, and even angry with myself, as I was gearing up to return to part-time work. I was even contemplating changing careers from a psychiatric occupational therapist to high school teacher. I altered my plans and looked forward to my fourth home birth as babies two, three, and four were born at home. I had a wonderful physician and midwife team that knew me and our family well. The baby was due at the end of the school year and I realized I’d have plenty of helpers over the summer.

Our Prenatal Diagnosis

However, at 25 weeks I was in a car accident. I wasn’t hurt, but I needed to be observed overnight in the local hospital to make sure the baby stayed put. They performed an ultrasound and discovered a heart defect and duodenal atresia (DA – a narrowing of the duodenum which prevented the amniotic fluid from being processed as quickly as it should have been, resulting in my very large belly at this stage). When the doctor suggested a chromosomal test was needed to check for Down syndrome, I literally fell apart. How did I let this happen?

One week later, it was confirmed that our new little girl had Down syndrome along with needing almost immediate surgery for the DA and heart surgery within the first year. Due to the high-risk category I now found myself in, I had to change doctors, plan a hospital birth and make arrangements for the kids at home. I researched Down syndrome, and then my husband and I met with the team of support personnel at the physician’s office. I discovered that I would be able to nurse this baby and she’d have her own style of nursing, too. But thankfully, more than one specialist stated that our best course of action would be to treat this new baby just as we treated our other children. We would still need to cuddle, rock, feed, bathe, and sing to the baby, have high expectations and goals, and love her most of all. This sounded a lot like the LLL philosophy I’d already been trying to embrace all along.

Entire Newlon family out for brunch, 2018.
This is the last time they’ve all been together.

Staying Positive

I became the family cheerleader. I reassured the other children that their new baby sister would be more like them than not, and that she would achieve many of the same milestones they did, but at a different pace. I reminded my family members that although I wasn’t currently practicing as an Occupational Therapist (OT) and had never practiced in the area of developmental delays, I had a good grip on the resources we might need. Little fragments of fear jumped out periodically only to be stuffed back in before anyone saw. All this positivity was wearing on me. Could I do this again? Did I have enough energy and most of all, did I have enough love to give?

Advocating with medical professionals

I continued to be positive in public and with the physicians. I’d gone from a practice of one obstetrician-gynecologist (OB-GYN) to one with 10 specialists. My first baby was born in a hospital birth and at the time I’d never heard of making a birth plan; so I created my very first hospital plan. I met with one of the OB-GYNs and an assigned pediatrician to share my ideas. I expressed my plan to nurse this baby as soon after birth as I could, just as I had with my other four children. This was one of the first times I had to advocate for something we had decided was best for our unborn child, and where I learned to hold my tongue, even if the string of sarcasm ran in my inner thoughts. One of the specialists stated that first we’d have to see if she was breathing and then check her Apgar scores. (Umm, yes, of course, just as you would with any other baby.) He went on to say in a condescending tone that she would need to have her stomach pumped prior to the surgery that would come within 48 hours of her birth. I calmly stated that those were good points, but it was also important for her to benefit from the colostrum that she’d get in the period before her operation. And whatever amount she got, whether it was a tablespoon or more, it would in all likelihood be digested by the time the surgery occurred. I went on to say that it was critical for me to assess her sucking ability in case I needed to gather more information from LLL. They looked stunned and finally said, “We’ll see.”

What I couldn’t tell the doctors was that I needed to start the bonding process immediately! I needed my baby to at least attempt to nurse, so I could see and feel her realness. I needed to begin to believe that I could be a good mom to this baby I felt so unprepared for.

Celebrating after a day of advocacy training at the National Down Syndrome Congress’ conference in Pittsburgh, 2019.

Welcome Rebecca!

At 38 weeks, Rebecca was born after nine hours of labor. She let out a strong cry, was quickly examined by the doctors and handed to me. Her dad and 16-year-old sister, Sarah, were in the room to welcome her, too. I put her to the breast and she did just as our other babies had. She nursed a little, then looked around to see her new world.

Due to a slow weight gain after the DA surgery at 36 hours old, Rebecca needed a nasogastric (NG) tube [1] until the heart surgery. We’d tried every trick to get her to gain weight but to no avail. I pumped every two to three hours around the clock, held her skin-to-skin for the majority of the feedings and attempted nursing once daily in order for her to remember how to do it. At 5 months, she had her heart repaired. Four days after her operation, she nursed with vigor. When she came home after seven days, she nursed so well I removed the NG tube and we never looked back. I knew to count the wet and dirty diapers and observe her overall temperament instead of measuring the ounces in a bottle. The nursing kept her immune system strong and I believe it helped her through the extensive family allergy issues, too. We had a wonderful and long nursing relationship that benefitted both of us on many levels.

Nursing Rebecca helped me see her as the child she was and not the one I’d imagined.
Nursing saved not only Rebecca, but it saved me, too.

 

Rebecca prior to the 8th grade dinner dance, May 2018. (This was the first event after developing alopecia so they made sure to adorn her beautiful head!)

Chris Newlon is a retired Occupational Therapist and mother of five, the youngest of whom has Down syndrome. She regularly attended La Leche League (LLL) meetings for eight years as an involved and dedicated member and then served as a Leader for five years in northern Illinois. While raising her children with her husband, Chris volunteered in local schools, became a volunteer public speaker for the National Association for Down Syndrome, and later was employed by them. In addition, she served on the Board of Managers for GiGi’s Playhouse McHenry County, a Down Syndrome Achievement Center, and was a consultant for the National Therapeutic Committee at Gigi’s Playhouse, Inc. Chris continues to be a strong supporter of nursing mothers and advocates for all children’s needs throughout their lives. 

This article originally appeared in Continuum, the members’ newsletter for Friends of La Leche League, December 2020, Volume 33, Number 4. Reprinted with permission.

Note

1. An NG tube is a tube that is inserted up a nostril. It goes down the back of the throat and ends in the stomach to give small amounts of liquid food.

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