Pregnancy was easy for us, I was glowing, and things were moving along perfectly. As my Ob-gyn said, I was the perfect patient. Testing and ultrasounds were normal, and we were set for an early August delivery date. After hosting a big neighborhood potluck at 37 weeks, my water broke. We packed a bag, got a dog sitter, and headed to the hospital, where I had an easy and quick delivery. It was in the postpartum wing that we noticed something wasn’t right. August was small. He had low tone, was presenting weeks earlier than he was, and couldn’t eat. We spent several days feeding him in any way possible, with syringes, cups, bottles, and breast, and nothing was working. He could not keep his body temperature regulated, and at 3am on his fourth day of life, as he began to exhibit seizure activity, the decision was made to LifeFlight August from our regional hospital to Levine’s Children’s NICU. This was just the start to our parenting journey.

In the fluster and flurries of the beginning of our NICU stay, the friendly staff and doctors began to rule out potential health problems August may have. 36 hour EEGs, scans, echographs, ultrasounds, you name it, he got it. As the “big, scary things” got checked off the list, we were operating under the impression that August was a bit more premature than we’d thought, and just needed time to grow and learn to eat. There was, however, one test result looming, and when that came back, our entire world changed.

At less than a month old, August was diagnosed with Cri Du Chat, or 5p-. This is a rare genetic disorder that is, in most cases, de-novo. 5p- is considered a spectrum disorder, and children and adults with 5p- are affected in a variety of ways, and the future of our life is uncertain. Armed with a feeding tube, a breast pump, and a lot of courage, we headed home from the NICU after 8 weeks.

One extremely overwhelming day in October, I received a wonderful phone call. Enter: The Complex Care Team at LCH. After a telephone introduction, and at our next appointment, an in-person one, the Team became a constant resource to us. The Complex Care Team and WARD'S Foundation have been vital to my son's care and my adjustment in Holland (if you know, you know). They provide us with scheduling help, guidance in medical decisions, social work help, and above all else, support. Navigating the needs of any baby, but especially a rare baby, can be a difficult, confusing, and isolating road. The Team and the Foundation make us feel seen, loved, and cared for. I know that my sweet August matters to them, and we are honored to be a testament of what it means to be rare. We love you Ward (and your foundation!).