Baby L's Medical Fund: We need your help!

On July 20th, 2022 our little girl was born with a congenital heart defect called Ebstein’s Anomaly and an associated condition, Wolff-Parkinsons-White syndrome. While 1 in 100 babies are born with a congenital heart disease, 1 in 200,000 are born with Ebstein's Anomaly. It is very rare and requires expert medical care.

In this condition, the valve that separates the top and bottom right heart chambers does not form correctly. This valve is called the tricuspid valve. As a result, the valve does not close as it should. Blood moves backward from the bottom to top chamber, making it harder for the heart to work.

In people with Ebstein anomaly, the heart can grow larger. This is the case with our daughter. The enlargement can lead to heart failure.

Her associated condition causes her heart rate to double (supraventricular tachycardia) under certain circumstances, due to extra electrical pathways in her heart. This impacts her oxygen level. This also leads to a high risk to her development, and high risk of damage to the heart and ultimately, heart failure.

Baby L has spent 14% of her life in the Cardiac Intensive Care Unit (CICU). Due to the multiple surgeries, medication, and constant care, the costs continue to increase.

We need your generous financial support!

Since Baby L was born, she has had an impeccably social and amazing personality. Her smiles have melted our hearts and everyone she meets. Once she was able to say "hi" she started shouting hi from the hospital room to every doctor, nurse, or potential friend that walked by her room. This is the best and worst thing for us as parents. It has led to days of happiness to have so a sweet child and tears, anguish, and fear for everything she has to bear. Until she receives proper medical treatment, she cannot risk getting sick. This means that we must keep her away from other children, family events, and be very cautious. Daycare is out of the question and personalized care is extremely expensive.

We kept Baby L out of harm's way for 10 months. In June of 2023, she caught her first cold. This landed us back in the CICU at Lurie Children's Hospital. She was in supraventricular tachycardia for two and a half days. After a 22 day stay, a very risky ablation surgery, and a new regiment of medication, they sent us home. Her second cold on December 31st, 2023, put us back in the CICU for 26 days. Just three weeks later, her oxygen, and constant tachycardia was too much, and we had to head back to the ER and then into the CICU. During this stay, the cardiology, surgical, and electrophysiology team at Lurie's Children's Hosptial decided that these events were evidence that she needed urgent and intensive surgery to repair her heart. Unfortunately, this could not be done in Chicago and a medvac was required to fly Baby L to Mayo Clinic in Minnesota.

Our life has been beyond stressful and disrupted in so many ways to ensure her safety and access to care. If you can help in any amount, please consider supporting Baby L. Your generous support will help fund the cost of her medication, multiple hospital stays, surgeries, an emergency medical transport to Mayo Clinic, and all of the unexpected expenses that come with living out of a hospital for days on end away from home. While my job has allowed us to get through some of this journey, many things are not covered, and these bills will be due in the upcoming months.

We came to Mayo Clinic because there are only a handful of surgeons in the world that can repair her heart through the Cone Procedure. Dr. Dearani is the absolute best thoracic surgeon to help our daughter and has perfected this procedure. Before this occurs, she must have her extra electrical pathways ablated so the tissue used to repair her heart does not cover up these areas. This past week while at Mayo Clinic, Baby L underwent her second very risky ablation surgery. While it seemed like a success at first, by the evening she went back into tachycardia. We were devastated. She will undergo the Cone Procedure on Monday, March 4th. It's our hope that during this open-heart surgery they will be able to cryoablate her extra electrical pathways before the repair. Then, Dr. Dearani will repair her tricuspid valve in her heart.

We will remain here in Minnesota for a minimum of 14 days and potentially longer. We have had an amazing team at Lurie Children's including nurses, physical, speech, and occupational therapists, electrophysiologists, cardiologists, and surgeons. We are beyond thankful for the team at Mayo Clinic with a world-renowned surgeon and the amazing nurses, cardiologists, electrophysiologists. We are also so thankful for all of our family, friends, and community who have supported us this far.

We just want a chance for our baby girl to grow up with a somewhat normal life. We have not known normal parenting, and we are okay with that. But, we want a chance to get there.

Thank you so much for your consideration in supporting our daughter.