BREAST FEEDING MY SON WITH DOWN SYNDROME
I was told that my son wouldn’t be able to nurse because he had Down syndrome.
A planned home birth attended by a midwife, he slipped into the world on a summer night six years ago. Everything seemed fine, but the following afternoon he began spitting up blood and my husband and I rushed him to the emergency room. I will never forget the sight of his tiny form on a table surrounded by doctors and nurses, and I will never forget the utter terror I felt. After a battery of exams and tests, he was diagnosed with a duodenal atresia, an intestinal malformation that prevented anything from entering or exiting his stomach. A fairly straightforward surgery would correct it, but it was devastating nonetheless to leave my newborn in the NICU that night and return home with empty arms.
Finn had major abdominal surgery the following morning, which involved an incision about three inches long, and a nearly two-week stay in the NICU. It was during that time that we received confirmation that he had Down syndrome, something my midwife had suspected when he was born.
For the first week or so after his surgery, he could not take anything by mouth; his intestines had to heal, so in the meantime he received nutrition intravenously. I was anxious to nurse him, and when my milk came in, I began pumping and storing my milk for him. Every day that went by without nursing him, I knew the harder it would be to get breastfeeding established. It was a very difficult time – trying to come to terms with an unexpected diagnosis of Down syndrome, shuttling back and forth between home and the hospital, trying to be good parents to all of our kids, and all of this was, of course, compounded by the anxiety of watching our tiny newborn struggle to recover from surgery and to surrender his care to strangers. We were supposed to be at home together, Finn and I, skin to skin, getting to know each other, basking in our babymoon.
Eventually I got a call from his NICU nurse. “Finn is ready to take oral feeds. Can you come to the hospital and try to nurse him?” I practically flew to the hospital.
It didn’t go well. By this time, Finn was over a week old and except for attempting to nurse him during the first few hours of his life before we rushed him the ER, he had received all of his nutrition by IV. He had also developed a strong oral aversion thanks to having been intubated and having tubes fed down his throat to flush his stomach. It was frustrating and disheartening, even with the help of the NICU lactation specialist. I finally became convinced that if we could just get Finn home, things would go a lot more smoothly; we would be in a more relaxed setting, and the stress of having multiple pairs of eyes watching and timing us and weighing and measuring him and his diapers after every feeding would be absent.
After nearly two weeks in the NICU, Finn was discharged. Breast feeding was shaky at best, but he would drink from a bottle, and I had mass amounts of pumped and stored breast milk by then.
Breast feeding did seem to get better at home. Within a few days, I was able to ditch the nipple shields I had been using to encourage Finn to latch on, and he was nursing so well that we stopped supplementing with bottles of stored breast milk.
When I took him to his pediatrician for his first post-hospital checkup, however, we discovered that he had not gained any weight since coming home. I was concerned, but not alarmed. Our pediatrician suggested we come back in a few days for another weight check. A few days later, he had only gained a couple of ounces.
There began a period of tracking Finn’s weight and obsessing over every ounce. A friend had loaned me her digital baby scale, and I weighed Finn several times a day, and recorded every reading on a small calendar. The results were alarming. I didn’t understand – he seemed to be nursing so well.
Finally, at another doctor visit during which it was revealed that Finn still hadn’t gained any significant weight, his pediatrician told me flat out, “He has Down syndrome. He’s never going to nurse properly. You need to give him formula.” He sent me home with several cans of formula.
I was devastated. I confess that I’m a breast feeding purist. None of my other kids before Finn (five of them) had ever had formula – not even my twins after I was told by the L & D nurses that with two babies, I would definitely have to supplement. It was a point of pride for me that I had successfully and exclusively breast fed all of my babies. Beyond that, it was just integral to the way I mothered. I could no more imagine not being able to nurse my baby than not being able to hold and kiss my baby. For me, breast feeding goes far beyond feeding and nutrition; it’s an intimate dance, an elemental communication between my babies and me.
All that said, I had certainly never faced any hurdles like this before.
I went home with my baby who wasn’t growing and the cans of formula the doctor had given me, and I cried. Then I called my midwife, who had stayed very close to us throughout the aftermath of Finn’s birth, and I told her what was going on. Without hesitation, she told me, “First of all, you’re not going to give him formula. If you must bottle feed him, you have a huge stash of breast milk in your freezer – give him that. Second of all, you need to find a good lactation specialist.” Realizing that she was right – I still had all that milk in the freezer – was a relief. I made some phone calls that day in search of a lactation specialist and made an appointment with one through our hospital’s Mother-Baby program.
Meeting with the lactation specialist was really the key. She assessed me and Finn nursing and explained to me that, yes, he was nursing, but his latch was weak, and this had caused my milk production to plummet, and the cycle was set. She put together a plan for us, which included using a supplemental nursing system that she rigged up for us, and certain nursing positions and techniques that would both encourage Finn to latch better and encourage better milk production. Not once did she indicate that his having Down syndrome would stand in the way of our being able to nurse successfully. Would it take some hard work, dedication, and patience? Yes. But it could be done.
That was a turning point for us. Using all the help the LC gave us, which included several more visits with her, Finn and I finally got a good nursing relationship off the ground, and he began to gain weight (and cry less!). For a long time, I was still obsessed with the baby scale, but eventually I gave it back to my friend.
Today Finn is a healthy, robust, mischievous, and very active six-year old. We ended up nursing for nearly three years – and I’ve never stopped being grateful to that LC who believed in us. Sometimes I explain that we nursed for so long because he had trouble learning how to drink from a cup and a straw, so nursing was almost his only source of fluids. While that is true, it’s also true that having had to work so hard to achieve breast feeding, I cherished that invisible cord that bound us together all the more, and neither of us were in a hurry to give it up.