Ainsley was born at just 36 weeks old, a Leap Day baby, due to an emergency C-section as I had preeclampsia and the HELLP syndrome (high blood pressure during pregnancy). Pregnancy was going smoothly until I had a severe pain that wrapped around my belly. A quick trip to the doctor’s office told me I was having the baby that night. I was transferred to Dartmouth-Hitchcock for the C-section. Ainsley was born a little peanut weighing just 5 lbs. 8 oz. and measuring 18.7 inches long. Receiving two 9/10 APGAR scores, we thought we had a healthy baby and had been through the worst of it.
Kid HERO Ainsley at CHaD
The second night at Dartmouth-Hitchcock she began moaning, which continued through the night and into the next day. She wanted nothing to do with eating. Thankfully, a grandmother with instinct began to ask questions, and the doctors at Dartmouth-Hitchcock ran all kinds of tests on her to figure out why she would not eat to make sure she was OK. This is when they found out she had an interrupted aortic arch, ventricular septal defect, and atrial septal defect (congenital conditions). She was rushed over to CHaD’s Neonatal Intensive Care Unit (NICU) and shortly after was sent to Boston Children’s Hospital (BCH). We had no idea she would be born with a heart condition until that moment. That is when we received a whirlwind of information from Dr. Flanagan the cardiologist at CHaD who tried to prepare us for what was to come.
At just four days old, Ainsley underwent open heart surgery at BCH and handled it like a champ. The next month would bring many challenges for Ainsley but each and every one she came out stronger. When her chest tubes were being removed, she needed CPR, which then put her on an ECMO machine, and a week later we finally got to the step-down unit, which provides an intermediate level of care between the intensive care unit and general surgery. Still refusing to eat, she underwent her second surgery for a g-tube to help her eat. 38 days later we finally got to bring our baby girl home.
Ainsley with her parents after heart surgery
This now meant many appointments at CHaD, the hospital a bit closer to home. They were wonderful, helping us get all appointments on the same day and working to wean her off the eight medications we came home on. Molly’s Place at the CHaD Family Center gave me this wonderful binder where I was able to keep track of everything and offered us gas cards to help with the expense of driving to these appointments. Just a few months later, one of the doctors helped us to remove the g-tube and we were able to feed Ainsley without it.
A few years went by, appointments seemed to be getting fewer and farther between and life was very normal for us. Ainsley was a typical three year old. However, we went for her echocardiogram around Christmas time where Dr. Goode, her cardiologist at CHaD, told us he thinks it’s time for Boston to help again as Ainsley had some scar tissue near the aortic arch. The words, as parents, we never wanted to hear again.
At age four, Ainsley had to undergo another surgery for what they told us was a simpler procedure compared to what she had already been through. She once again handled this surgery like a champ, much harder on us parents since she was old enough to know what was going on. We were not staying at home, not eating home food, etc. Ainsley came out of this surgery in heart block (an abnormal heart rhythm) once again. When she was a baby, she was in heart block for 14 days, but then came out of it and we escaped having to have a pacemaker inserted. This time we were not so lucky. Ainsley needed a pacemaker, so back to the operating room once again. All of this happening while the pandemic was starting to hit the US – it was very scary and unsettling. Fourteen days later we got to go home. Child Life has definitely been a life saver for us, helping Ainsley along the way with toys and distractions to help ease some of the pain.
Ainsley playing with toys and games provided by Boston Children’s Child Life team
Throughout all of this Ainsley has been nothing but a strong, brave, normal little girl. She is in dance class, rides her bike, enjoys camping and playing outdoors. She is always happy and school and day care tell us she is a wonderful friend – words any parents want to hear. We are so proud of her and have always thought she is our HERO. There were no better words than to hear from CHaD that our child would be chosen to be the 2021 Kid HERO. We are beyond thrilled and couldn’t be happier to share our story. We are thankful for Ainsley’s team of doctors at CHaD who collaborate with BCH and for Child Life for letting Ainsley be a kid while in the hospital and bringing a huge smile to her face. Dr. Goode is amazing with her, always letting her use his stethoscope and pretend to be his doctor. Ainsley tells us she would like to be a doctor someday like Dr. Goode and Dr. Lim Liberty!
We are thankful for CHaD. We like to pay it forward by donating items to CHaD Child Life, and we thank you for your fundraising efforts to help all the children at CHaD be a kid.
– Jessica, Ainsley’s mom
Ainsley with her parents, Jason and Jessica
Register today for the 2021 CHaD HERO today by visiting www.chadhero.org to support CHaD’s 95,000 pediatric patients like Ainsley.