We opted not to have prenatal testing, so our son’s diagnosis of Down syndrome was first suggested by a neonatologist while my abdomen was still wide open on an operating table. I write this according to my own experience, and because it sure would’ve been nice to have it when I was recovering in the hospital and trying to understand what having a child with Down syndrome meant, both in the immediate future, and longer term.
Our son, Alex, was whisked away after only a brief introduction. He was born in distress and needed the support of the neonatal team in order to stabilize. By the time we got to see him again later that night he was on oxygen. This is common in newborns with Down syndrome, but it unnerved me. Learning to breathe takes a lot of energy for any newborn, and since people with Down syndrome are born with low muscle tone (hypotonia) breathing takes even more effort than average. The oxygen gave him a little boost until he became strong enough to get the hang of breathing on his own.
I spent my time in the recovery room wondering if my husband would still want to name our son after his grandfather and himself if he did actually have Down syndrome. I can smile about it now, knowing that there was no question about it, that we did make him a namesake and have never regretted it. But this is what went through my mind, and though it seems silly in hindsight, it was a legitimate fear at the time.
By the next morning a feeding tube had been placed in his nose, and a cardiologist had been called in to check his heart. This is all status quo as well. Over 50% of babies with Down syndrome are born with heart defects, and many go on to have open heart surgery. Alex had a small hole in the septum between the ventricles in his heart, but his did not require surgery. It closed on its own and after a year of appointments and echocardiograms he was given the all clear.
I was disappointed right off because I had breast fed my first child immediately after her birth and enjoyed nursing her for a full year. My son needed the benefits of breast milk even more, but because of his need for neonatal care, I wasn’t able to nurse him right away. I did start pumping immediately, and tried to get him to nurse. He was tired and floppy though, and just couldn’t latch. The lactation consultants at the hospital coached me along and helped ease my disappointment. Even though Alex couldn’t latch, the attempts to nurse gave us skin on skin bonding time, which is precious as well. Thankfully I had no problem producing milk, and before I knew it I had a stockpile of breast milk ready for him.
It took Alex about a week to get breathing and eating down pat so that we could bring him home. He had no medical complications other than the tiny hole in his heart, which gave him a big advantage. He was still in the hospital when we got the results of the genetic testing (called a karyotype) that gave him the official diagnosis of Down syndrome, but we knew before it even came that he did indeed have it.
Upon his discharge from the hospital, he got referred to Early Intervention services, and within a week an Occupational Therapist called to set up a meeting, which occurred right at home. Our OT was kind and professional, and a huge help in learning about things like hypotonia and gave us tips on helping Alex become strong and capable. She continued to see him until he turned three and started school and she became a family friend.
The Early Intervention team eventually included a teacher and speech therapist (SLP). Some kids also see a physical therapist, but that was not the case for Alex.
I eventually gave up on nursing him, and focused on stockpiling enough breast milk to feed Alex until he was about 6 months old. I was pretty cranky about pumping, which took a half hour, and feeding Alex took about the same amount of time, and we fed and pumped every 2.5 hours around the clock, doctor’s orders. I felt like I had no time for anything, and had just had it, when my husband suggested trying to nurse Alex just one more time. It had been a couple of weeks since I’d tried, and I did it out of pure spite. How dare he, the one with useless nipples, tell me I should try to get our son to latch. I might have even told him it would be about as useful as him getting Alex to latch. But I did try, and Alex did latch. He was 6 weeks old, and from that day forward he nursed exclusively. This experience is more of an exception than the rule, but I think it warrants inclusion in the story, because it taught me to never underestimate the power of trying just one more time.
Alex had the very typical experience of having sinus and ear infections, and went through about a dozen sets of ear tubes as well as tonsils and adenoid removal, but has been otherwise healthy.
I fell into a mindset when he was tiny that my child with Down syndrome would be high functioning, which would make everything okay. For a couple of years I clung to this notion, before realizing that my son was okay no matter what. He was and is precious and worthy, no matter what his IQ, which is just about average for a person with Down syndrome.
We’ve learned a lot in the almost 16 years since, but most importantly that Alex is a good human being. His bonus chromosome doesn’t make him an angel, more precious or wonderful, and it doesn’t make him less than anyone else. He is who he is, and that is a witty, goofy teenage boy with more than a little attitude and a whole lot of fun.