Written by Jennifer Rahn
For every 1,000 TWIN pregnancies, roughly TWO will have at least one baby with Down Syndrome.
When we discovered that we were expecting our fifth child, we were surprised to learn that we were having twins –– and two boys! Because I had to have surgery during the pregnancy, I saw a high-risk MFM physician who knew instantly at the 10-week ultrasound that William was quite unique. He had a thickened nuchal fold, and we were advised to do the NIPT screening or amniocentesis to figure out if he had "one of the trisomies." We went with the NIPT and found out that there was a 70% chance that Will had Down syndrome. That was a high enough likelihood, along with the thickened nuchal fold, for us to assume that William had Down syndrome. We met the diagnosis with complete acceptance, but some fear of the unknown.
At 12 weeks pregnant I had surgery; at 20 weeks pregnant, we found out that William lacked a center wall in his heart, and had a heart valve that would need bifurcating. At 38 weeks pregnant, I delivered William and his twin brother Holden via planned c-section (because both boys were breech). William spent some time in the NICU, but then came home and thrived with breastfeeding (or so we thought). When we went in for our first cardiology check when William was just a month old, he was sent directly to the cardiology inpatient floor at Children's National Medical Center with a failure to thrive diagnosis. He stayed inpatient for over a month, as he could not breathe well or get sufficient calories without an NG tube. Many medical complications ensued. That month, with four big kids home during a pandemic (this was mid-2020), a baby at home, and a baby on lockdown in a different city, was TOUGH.
When William was four months old, he had his AVSD repaired. Though the surgery went relatively well, he did code on the OR table, and his heart never regained its normal rhythm. A week later, William had open-heart surgery again – this time, to put in a pacemaker to keep his heart beating in the proper pattern.
A few days later, I noticed that William's chest was red and that he was feeling sick. I begged the medical team to listen to my concerns, and Will was subsequently diagnosed with a massive surgical infection. He spent an additional 3 weeks in the hospital as his medical team cleared his infection.
William ended up coming home with a feeding tube, but we were able to trust our guts and pull it within a couple of weeks so that he could begin to feed on his own again. William had developed an oral aversion from the NG tube, and was traumatized from the surgery. But, with sustained and regular therapies, he is now a thriving 2.5-year-old.
William's growth, both physically (he weighs 21 pounds!) and developmentally, is behind many of his peers with Down Syndrome; however, we fully accept that William is on Will's own timeline, and it is perfect. Will is pure light and tremendous joy. Therapies are daily and multitudinous, but we are heavily invested in helping William feel confident in fulfilling any dreams he has –– and in helping him navigate challenges so that he can lead a joyful and healthy life.
You can connect with Jenn and William on Instagram @seeingbeautythroughthepain