Caring for a Child with Heart Failure: Maddison and Lorelei
By Maddison Large
In June 2022, I welcomed my daughter Lorelei after a normal pregnancy. We had no indications of heart failure or congenital defects when I was pregnant or when she was a newborn. It wasn’t until Lorelei was three months old that I noticed the signs: respiratory distress (what I now recognize as “indrawing”), eating less and sleeping more than a typical three-month-old. Lorelei was then diagnosed with Dilated Cardiomyopathy and placed on the transplant list. But first, she required an LVAD (Left Ventricular Assist Devices) – her first open-heart surgery.
Her diagnosis and operation was very hard for our family at first. Lorelei’s four-year-old big sister back home struggled a lot being separated from us; more than anything, she missed her baby sister. I still suffer from anxiety and PTSD related to Lorelei’s heart condition, but overtime it does get slightly easier.
The help from family and friends during this time was nothing short of amazing.
Unfortunately, complications with the Berlin Heart (a type of Ventricular Assist Device) led to a cardiac catheterization. Based on those results, we then made the scary decision to remove the Berlin Heart and place a pulmonary artery band – Lorelei ‘s second open-heart surgery.
I personally struggled with the thought of my child needing a heart transplant and what that meant for another family and their child. It is something I still reflect on daily.
Although Lorelei did not need a transplant, for which we are incredibly grateful (and, in some ways, relieved), this is still a difficult situation to wrap our heads around and we are just taking it day-by-day.
After seven months as an inpatient, Lorelei is finally home. She was lucky that she did not need a transplant – for which I am so grateful. Now, one year later, our little 2-year old warrior is thriving on her medications and recently celebrated her first Heartiversary!
Maddison’s tips to other parents:
- A support system is important! Reach out to friends and family during this difficult time
- Trust yourself and your knowledge of your child. When you see signs of concern, seek medical attention and advice
- Join groups, such as online communities for parents or caregivers
- Involve yourself in any learning opportunities
- Do not be afraid to ask questions