Tallahassee family needs help with heart transplant for baby boy

Becoming pregnant and delivering your baby during a pandemic may be hard enough.

But discovering during that pregnancy that your baby boy would be born with a life-threatening condition brings another level of anxiety.

When little Tallahassee-born Benjamin Nelsen was born to Tiffany and Matthew Nelsen in August 2021, it became clear that his Right-heart Syndrome, in this case an underdevelopment of the lower, right chamber of his heart, would not be compatible with a normal life.

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In fact, immediately, surgeons performed heart surgery on the newborn to attempt to keep oxygenated blood moving through his body and keep his other organs alive.

The first surgery was not successful. Nor was a second attempt. And with pediatricians, surgeons, and a large medical team’s collaboration, it was determined that the only solution for Benjamin to remain alive and to grow and thrive next to his little sister, Marjorie, would be a heart transplant.

In the meantime, to keep him functioning, a vascular assist device, also known as a, “Berlin heart” was attached to the child to serve as a kind of “back-up heart,” if and when his little organ cannot pump enough blood.

Now, Benjamin waits at Shands Hospital, attached to the machine that keeps him alive.

Estimated waits for new hearts for such tiny babies range from eight to nine months or more. In the meantime, his parents attempt to go on providing for their daughter, working, and hoping. They admit that the expenses of relocating to a house 45 minutes from Shands has not been easy. But being with Benjamin every day is also essential.

With the cost of a life-saving transplant often exceeding $800,000, most transplant families are unable to shoulder that financial burden. The Children’s Organ Transplant Association (COTA) is a national 501(c)3 charity dedicated to organizing and guiding communities in raising funds for transplant-related expenses.

This is where volunteers from COTA, have stepped in to help coordinate fundraising to assist the family during this time.

Family friend, Asia Hutchins, one of the COTA coordinators, says that 100% of all funds raised for Benjamin and his family will go to his transplant related expenses. Hutchins and her group of volunteers hope to raise $60,000 for the cause. And Papa John’s Pizza will assist.

On Tuesday, Nov. 16 — all day — 20% of all sales from Papa Johns will go to the COTA Fundraiser for Benjamin Nelsen. The family thanks in advance all who help on the journey for their little boy, and to Papa Johns for caring.

COTA helps transplant families avoid financial devastation. Once the transplant is complete, families face significant transplant-related expenses, including medication; transportation to and from the transplant center; lodging; and expenses while parents are out of work and often living with the hospitalized child far from home.

Benjamin’s family has asked for assistance from the Children’s Organ Transplant Association. One hundred percent of all funds raised for COTA in honor of patients assist with transplant-related expenses.

How to help

What: Children's Organ Transplant Association fundraiser for Benjamin Nelsen with 20% of all sales on Tuesday, November 16 going toward Benjamin’s support

When: All day Tuesday, Nov. 16

Where: Papa John's Pizza, 6753 Thomasville Rd #112, Tallahassee

Details: Follow Benjamin's story at cota.org/campaigns/COTAforBenjaminsHope

Donating: Contributions may also be sent to the Children’s Organ Transplant Association, 2501 West COTA Drive, Bloomington, Indiana, 47403. Checks should be made payable to COTA, with “In Honor of Benjamins Hope” written on the memo line. Secure credit card gifts are accepted online at cota.org/campaigns

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This article originally appeared on Tallahassee Democrat: Tallahassee family awaits heart transplant for baby Benjamin