Baby JM has a Heart Defect (TGA)
Donation protected
Hello, my name is Becky & my husband, Mark and I are expecting our last child, who will be named Zion. 
We recently found out through doctors/specialists at Maine Medical Center, that our baby has a heart defect, one that’s critical. The heart defect is called Transposition of the Great Arteries, aka TGA. This heart condition affects 1/100 babies. No parent/family can be prepared for a life changing event like this.
TGA is when the vessels in the baby’s heart are crossed, causing blood to not flow properly. With this recent diagnosis, not only is our baby’s heart defect now critical, my pregnancy is now high risk. Baby JM is also at high risk for developing these neurological conditions later on:
With this high risk pregnancy, it was in mine/Zion’s best interest that care be transferred to Boston Childrens Hospital and Brigham & Womens Hospital. I will be getting induced early, in December 2022 and Zion will need open heart surgery after birth. Right now its expected we will be in Boston for at least a month, until January 2023.
We’re not just being financially impacted but our lives in full have been impacted—we’re uncertain if my husband will be able to stay with us in Boston for the whole timeframe, as we have 2 older children home in Maine. Our oldest 2 know that “their baby is sick”. We’re hoping my family can help us watching our son & daughter in December, but it’s not 100% guarantee. In the event we get approved for temporary housing in Boston, my son will also have to miss school causing a big disruption to his routine.
My first round of appointments is September 15, 2022.
I’ve created this GFM to help offset financial costs over the next 3 1/2 months til Baby JM is discharged. Costs will include:
Any additional funds will help go towards: rent, impending hospital bills, etc.
Thank you for supporting us during this difficult time. —The Johnson-Mcdonnell Family
We recently found out through doctors/specialists at Maine Medical Center, that our baby has a heart defect, one that’s critical. The heart defect is called Transposition of the Great Arteries, aka TGA. This heart condition affects 1/100 babies. No parent/family can be prepared for a life changing event like this. TGA is when the vessels in the baby’s heart are crossed, causing blood to not flow properly. With this recent diagnosis, not only is our baby’s heart defect now critical, my pregnancy is now high risk. Baby JM is also at high risk for developing these neurological conditions later on:- Coffin-Sirius Syndrome
- Autism
- ADHD
With this high risk pregnancy, it was in mine/Zion’s best interest that care be transferred to Boston Childrens Hospital and Brigham & Womens Hospital. I will be getting induced early, in December 2022 and Zion will need open heart surgery after birth. Right now its expected we will be in Boston for at least a month, until January 2023.
We’re not just being financially impacted but our lives in full have been impacted—we’re uncertain if my husband will be able to stay with us in Boston for the whole timeframe, as we have 2 older children home in Maine. Our oldest 2 know that “their baby is sick”. We’re hoping my family can help us watching our son & daughter in December, but it’s not 100% guarantee. In the event we get approved for temporary housing in Boston, my son will also have to miss school causing a big disruption to his routine.
My first round of appointments is September 15, 2022.
I’ve created this GFM to help offset financial costs over the next 3 1/2 months til Baby JM is discharged. Costs will include:
- Gas ⛽️ ($150 round trip from Portland to Boston)
- Hotel (Avg rate in Boston suburb for 1 night, about $150-$200)
- Parking at BCH: $10
- Charlie card: $20
- Food: $40-$50
- Patient Family Housing Program for my family to stay while were receiving care in December if application is approved (Devon Nicole House or Yawkey Family Inn at BCH): $30/night for 3 1/2 weeks.
Any additional funds will help go towards: rent, impending hospital bills, etc.
Thank you for supporting us during this difficult time. —The Johnson-Mcdonnell Family
Organiser
Rebecca Jae
Organiser
South Portland, ME
