Summer's Medical and Travel Expenses

Hello, my name is Krystle, and I'm fundraising for my niece Summer.

Summer was born May 3rd on what was supposed to be moving day for her mom and dad, Jen and Kurt. She was born at 36 weeks and 5 days and required a two-week stay in the NICU/special care nursery at Children's Minnesota.

Within six days of Summer's arrival, Jen and Kurt were informed that she had two holes in her heart, a Ventricular Septal Defect (VSD) and Atrial Septal Defect (ASD). She was assigned a cardiologist at Children's Minnesota and began her journey to healing and developing a plan to solve these two issues.

On July 19th, after a catheter diagnostic procedure, Jen and Kurt received news from the procedure that no parent could anticipate. Summer was diagnosed with Pulmonary Vein Stenosis (PVS). PVS is not well understood, exceedingly rare, aggressive, complex, and the survival statistics are devastating. There is a 1.7 chance in 100,000 of a child under two being diagnosed with PVS. That equates to just about 31 of the 3.66 million babies born in the US during all of 2021.

A few programs in the country specialize in PVS, and Children's Minnesota is not one of them. While Children's Minnesota is not specialized in PVS, her cardiologist's attention to Summer resulted in early detection of PVS, which is key to increasing her chances of survival.

Jen and Kurt began searching for the best program for Summer, and on August 3rd, they were informed Boston Children's Hospital (BCH) had accepted Summer. They were able to speak to the head nurse practitioner of the program as well as the surgeon who would perform open heart surgery on Summer.

Summer's journey to healing begins on August 24th when the three of them fly to Boston. The first step will be a catheter procedure on August 26th where they will use a balloon to expand the pulmonary veins that return oxygenated blood from her lungs to her heart. Then, the following week, on September 1st, Summer will have open heart surgery (OHS). During OHS, they’ll repair the VSD and ASD, and enlarge the left side of her heart to straighten the pulmonary veins with the aim of preventing the stenosis in them from returning.

The funds raised will help support Jen and Kurt's travel expenses (flights, hotel, food, etc.) to ensure they can provide Summer with the best chance to beat PVS. Summer has brought so much joy to their lives and countless others who have met her.

Jen will remain in Boston the entire time Summer is there. Her work is extremely supportive, but she will be taking some time off unpaid as she has just returned from maternity leave. In addition, Kurt will be making two separate trips to ensure he can continue working as a self-employed business owner.

While the BCH team and our family is hopeful Summer will not have a recurrence of PVS, we may not know for many months to come. She may need multiple visits to treat her PVS, but those visits should be significantly shorter with treatments only to balloon the veins and keep PVS at bay. BCH believes most kids outgrow PVS or at least the most aggressive form of it by age two or three.