Resiliency Comes in All Sizes: Breastfeeding a Baby with Down Syndrome (Part 1 of 2)

By Sabrina Woosaree-Hazlett – Edmonton, Alberta, CanadA

I have what I would consider a long history of mothering. I have always been a nurturer. As a little girl, I enjoyed watching over my younger siblings. As I got older, I took on volunteer and paid positions working with children. And now I am a health professional with four children, including one with Down syndrome. My pre-parenting experiences gave me a good idea of the kind of mother and parent I desired to be. But it was my fourth and last child who taught me most clearly the deepest meaning of life lies beyond breastfeeding and mothering challenges. Equally important is resiliency and humility on the journey to accept what has happened, and then moving forward with the help of others — especially, community.

 “If breastfeeding is like riding a bicycle, the challenges of each mothering experience you have is like the variety of terrains that you learn to ride your bike on”

Reflecting on my birthing and mothering experiences, I had many challenges but one that is thematic is breastfeeding. If I had not been resilient in overcoming the challenges of birth, bonding, and breastfeeding my first, second, and third children; I don’t think I would have been as resilient and be the mother I am now for my fourth child, Bhavin. For you see, my first three children are typical children, they are the children that most people expect to have. Bhavin is not typical; he has Down syndrome, a diagnosis in which the 21st chromosome has three copies instead of two, which is unexpected. His unexpectedness and my resiliency culminated in him being the most prominent miracle in my life. I am part of the lucky few to have him in my life.

Breastfeeding Bhavin was the most difficult terrain I have ever had to ride my “bike” on; it was more like professional cyclist level — sometimes even surpassing the level of experts I sought. Bhavin was born eight weeks early via an emergency cesarean delivery. During one of my routine prenatal appointments, I am grateful it was discovered that the umbilical cord was failing. My sweet baby had low muscle tone and required planned surgery immediately after birth. After surgery, I watched him on a ventilator, wishing he was in my arms. He had difficulty expanding volume in his stomach, leading to very slow and stagnant weight gain. His diagnosis as written on one of his many care plans: “failure to thrive.” 

Being an ambitious mom and health professional — and perhaps with a little touch of crazy — my goal was to help Bhavin exclusively breastfeed, at the breast, for all his feedings. Some thought my plan was unrealistic and impossible because of significant challenges that we faced on the road to that goal, but it was my target destination, nonetheless. 

Challenge 1: Separation and bonding postponed

I knew when I was pregnant that Bhavin had Down syndrome. Regular in-depth ultrasounds and a special ultrasound by a fetal cardiologist, a specialty within a specialty, revealed it. I knew he would have at least a hole in his heart, so the possibility of cardiac surgery was still on the table. He absolutely would require gastric bypass surgery to correct for duodenal atresia, an obstruction in a small segment of the small intestine called the duodenum. He would also lose the function of part of his intestine as a result of the surgery, but he would fortunately be able to digest food. 

My husband and I planned for him to be born in one of the top hospitals that care for high risk pregnancies. However, after birth he would need to transfer to a different hospital where they are equipped to perform high risk surgery on a prematurely born baby with Down syndrome. Little Bhavin was transported there in an incubator via ambulance. Due to a complication with my “planned emergency cesarean delivery” (he would not have survived a vaginal birth), I visually saw him for literally a second from afar. It was agonizing not getting to touch, smell or see him up close. 

My husband accompanied Bhavin in the ambulance to the pediatric hospital, and I was alone. I was alone a lot. I was not allowed to have anyone visit me for a while. I think it is because I had lost a lot of blood and looked like death! Due to my health complications, I was in the hospital for five days. I was not able to be present to support Bhavin during his surgery on day three. My poor husband was driving back and forth from hospital to hospital, and then back home to see our other three children. 

I was eventually given a pass from the hospital to go visit Bhavin and was so weak, I had to use a wheelchair. Fortunately, I was eventually discharged. But it took around three weeks before I was able to transport myself across a hallway without a wheelchair. 

After my discharge, I was at Bhavin’s side once every day. My first birth experience of not holding my first child, Devdan, for four hours after his birth — and then seeing Devdan for only five minutes up close — helped prepare me for my separation from Bhavin after his birth. It also made me determined to enjoy each moment I could.

Challenge 2: Surgery and breastmilk delay

Since Bhavin required gastrointestinal surgery immediately after birth, he was given nutrition intravenously via his umbilicus. After the surgery he had to wait for two weeks for healing to occur and have a contrast dye ultrasound to confirm that there was no leaking from his intestine where the surgery was performed. Until this was confirmed, he could not have any oral nutrition including breastmilk. In this same timeframe he was on a ventilator. He was determined! The nurses remarked that he was showing great strides coming off the ventilator sooner than predicted. 

I met with the neonatal intensive care unit (NICU) lactation consultant who helped me establish a pumping and freezing schedule. I have been fortunate that milk production has never been an issue for me, but getting the process started was always slow with each of my children. It usually takes four or five days of pumping before I can start to yield a total of one ounce of milk, and this time was no different. But before long, I was producing almost four to five ounces of milk per breast. Hooray! I stockpiled lots of milk in the freezer.

By the time Bhavin was ready to receive my expressed milk, he was two weeks old and off the ventilator. After successfully passing an “ultrasound test,” Bhavin had a nasogastric (NG) tube, set in place to begin feedings that way. 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. He was given small amounts of breastmilk to get his stomach used to having nutrition in there. Bhavin’s main nutrition was still through his umbilicus, using a special type of intravenous catheter that is threaded through his vein. This type of catheter’s threading stops just above the aorta of his heart, and is called a peripherally inserted central catheter — or “PICC line” for short. When he was able to show that the breastmilk stayed in his stomach without vomiting it up, I was finally able to put him to breast. It felt wonderful!

Challenge 3:
Multiple hurdles – Nasogastric feedings, stomach expansion, and going off the PICC line

While Bhavin was in the Neonatal Intensive Care Unit (NICU), he started one of his largest and most pervasive challenges: increasing his tolerance for digestion. This was necessary to help him move toward feeding exclusively by mouth, and a prerequisite to weaning completely off the PICC line. 

Another challenge was similarly large: getting him to wake for feeds or any kind of oral stimulation. Keep in mind, he was born prematurely at 34 weeks old, so his ability to wake up at all for feeds was practically nonexistent. Gestationally, he ought to still have been in my womb, packing on the fat layers much needed for temperature regulation, and finishing development of his lungs. Instead, he was born 4 pounds and 8 ounces (2.040 kg) — such a tiny, sleepy boy!

It is important to note that the decisions of the amount, time, what, when, and how to feed Bhavin was not my decision. He needed to get to a point where he was nourished by using his gastrointestinal system only and not his cardiovascular system. Something that is out of my realm of expertise. My job was to produce breastmilk for his feeds and to attempt bottle feeding or breastfeeding with him as I wanted.

Thankfully, my health care team — including NICU nurses, unit nurses, lactation consultants, doctors, specialists, and pediatric registered dieticians, along with parent to parent ICU support groups — encouraged me greatly. I could not have achieved what I did without the help of these talented and compassionate people. 

That aside, there was a silent tug-o-war going on inside me. I wanted to breastfeed him, but each attempt at breastfeeding — with or without a nipple shield — proved unsuccessful. And even feeding expressed milk via a bottle made me feel a little sad, because he was refusing a bottle too. If he could not even accept a bottle as a feeding device for expressed milk, then how could he ever get off his nasogastric tube feedings? I knew it was not my technique. The NICU lactation nurse saw me attempt to breastfeed him on many occasions and on one of them, she told me that my technique was good. She reassured me: Bhavin was just learning, slowly but surely, how to feed in a manner other than NG feedings.

The NICU doctors and nurses promote breastfeeding and breastmilk for many reasons. One nurse told me they prefer breastmilk to be given, especially for babies that are more medically compromised; they may even prescribe donor human milk if need be. Breastmilk is easier on the stomach and is easily digested, especially for babies born prematurely, as Bhavin.

It was explained to me by the doctors and nurses that less irritation occurs in the throat if breastmilk is vomited or accidentally goes into his lungs. For you see the NG tube does not take up the full amount of space in the nasal cavity or esophagus. So, if Bhavin vomited, the vomit (emesis) did not go back up through his NG. Instead it travelled up the esophagus and throat instead. Sometimes when this happens, the NG can be brought up and snaked out of the nose because of the pressure. After vomiting, baby is cleaned up and the NG reinserted. Sneezing can also cause the NG to come out. The whole process can be really challenging for the healthcare provider!

I recall the nurses, doctors, dietician, NICU lactation consultant, etc., discussing how much, how long, and how often to feed Bhavin. They used a needleless syringe that was placed in an automatic pump so that he would get little amounts of breastmilk into his stomach over 45 minutes every three to four hours. I cannot recall the exact numbers, but the nurses started him with approximately five milliliters, and then they increased this amount sometimes milliliter by milliliter every two feeds. For example, they would increase the amount if he did not show any signs of vomiting. When he did vomit, they would stop and go back down to the previous amount for the next couple feeds before increasing him again by a more reduced increment. The goal was to give him the amount he was able to keep down, doubled every 24-48 hours. The NG feeding plan was visited and revised every day during morning report rounds with his healthcare team. They included me in the discussions and ensured I understood what their goal and plan would be for that day. 

As they were monitoring the increase in his feeds, they were monitoring and doing other interventions at the same time. As his breastmilk NG feeds increased, they would decrease the amount of intravenous nutrition through his PICC line, until eventually the PICC line was removed. During feeds he was propped up to prevent unintentional reflux of breastmilk. Prior to every feed, the nurses tried to wake him up a bit and get him to suckle on a soother for 1-5 minutes. They would reward the suckling with drops of breastmilk into his mouth. Due to his prematurity, he was very sleepy and was difficult to rouse. Strengthening his endurance and force of his suckling was difficult because he has low muscle tone as is the nature of having Down syndrome, meaning people with Down syndrome can tire out faster. The most amount of suckles on a soother he did for me was five over a 5-minute period, and that was on a good day. If possible, we would try during the NG feed to use the soother so he could associate his stomach fullness with oral mouth stimulation. Each session didn’t last long but I would persist with this because I yearned for the pleasure of breastfeeding him as I did my other children.

However, this was not the end of little Bhavin’s feeding story. Hope was on the horizon! 

Stay tuned for part two of this inspiring two-part story on little Bhavin’s rise in the face of adversity — including overcoming low muscle tone, oral weakness, sleepiness, and slow weight gain, along with his weaning from nasogastric tube to bottle of expressed milk, weaning from expressed milk to breast, and more. Check out the rest of this Down syndrome baby’s inspiring breastfeeding story, in our June issue of Breastfeeding Today.

 

For nearly three years Sabrina has been a La Leche League Leader in Alberta, Canada, and she has never lost her sense of urgency to help other parents in need. A registered nurse, she also blogs and is a vocal advocate for children’s mental health, child development, and developmental disabilities.