Hi, I’m Brooke. My husband (Adam) and I have a busy household with three wonderful kids, Jackson (13), Abram (11), and Ellie (2). We also have a one-year-old rambunctious boxer named Moose. Welcome to our family!
Ellie is the star of the show on this page, which has a dual purpose of educating people about Down syndrome and sharing how normal life with a child who has Down syndrome can actually be. When I was pregnant with Ellie, I craved seeing other families who had a child with Down syndrome so that I could get a glimpse into my future. While Google filled me with a terribly negative view of what was to come, I discovered so many families who were happy and living perfectly normal lives with their kid(s) who had Down syndrome. Those families gave me hope that a Down syndrome diagnosis wasn’t as bad as I initially thought. Since then, I have learned that kids with Down syndrome are much more like their typical peers than different along with so many other lessons that I never would have understood without having Ellie. I really hope that this page can show women with a prenatal Down syndrome diagnosis, families with a new baby who has Down syndrome, and society in general that life with a child who has Down syndrome is beautiful!
Ellie’s Story
Pregnancy
Ellie was a surprise pregnancy with an even more surprising NIPT test result of Trisomy 21, the most common form of Down syndrome, at ten weeks. We really only had the test because I had always so desperately wanted a baby girl, and I was too impatient to wait to find out the sex at our 20-week ultrasound. We confirmed the diagnosis shortly after through CVS testing. Looking back, my doctor knew something was off even earlier due to really high hCG levels (which were making me ridiculously sick). He called on a weekend to ask me to come in for an appointment on Monday because he was “dying to know what was going on in there.” He suspected multiples, but the ultrasound only showed one baby.
After the CVS testing, we switched to an MFM, and complication after complication arose. Ellie had hydronephrosis (swollen kidneys) and a really large liver, causing doctors to believe that she had TMD (a transient form of leukemia found only in babies with Down syndrome). I had to go to the doctor multiple times a week to make sure that she hadn’t developed hydrops. Of course this was in 2020, so I had to do all of these scary appointments where doctors could give me the news that my baby wasn’t going to make it alone. My health also suffered; I developed gestational diabetes and severe anemia. In the end, I delivered her at 37 weeks due to complications with my diabetes. After all of the talk of TMD, the doctors decided that her enlarged liver was probably actually due to my diabetes, but since it is a transient form of leukemia, we’ll never know if it just went away in utero.
Birth
Ellie was born on 12/28/20, a beautiful 7 lb, 13 oz. baby girl. She still had hydronephrosis, but there were no signs of TMD. She also had two previously unseen heart defects, an ASD and PDA, which eventually closed on their own with no need for surgery. An entire team of different types of doctors were present for my delivery, and one by one they cleared her as healthy enough to go home. One doctor told me during rounds that they were expecting her to be a very sick baby; instead, she was the wild child of the NICU. One of our nurses told her that she was going to have to hold down the screaming because the other babies in the NICU weren’t as healthy as her. After four days in the NICU, we were released.
Siblings
Anyone who has a child with a disability is concerned about how it will affect siblings. Adam and I carefully planned what we would say to Jackson and Abram to prepare them to have a sister with Down syndrome. Our talk did not go as expected. We told them that 1 out of every 700 babies is born with Down syndrome, and Jackson’s reply was, “1 in 700!?!? How did we get so lucky?” He also mentioned that she was like a rare Pokémon card. We abandoned the conversation thinking that they just couldn’t understand and that we’d have to revisit it later. I couldn’t have been more wrong. Those boys love their sister more than anyone in the universe, and they’ve done nothing but celebrate her differences.
Our Lives Today
Ellie is a healthy, wild two-year-old girl. She excels with her gross and fine motor skills, but she is speech delayed. We work on all of her skills with weekly PT, OT, and Speech sessions, and she attends daycare with typical peers her own age. She is thriving!
Every member of our family (and if we’re being honest, anyone who comes into contact with Ellie) is completely in love with her. She was our missing piece.
