Local Mom Desperate to Help Her Son; Support His Medical Journey

By: Rachel Norton
| Published 07/17/2020

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THE WOODLANDS, TX – In 2014, doctors told Michelle Boehme that her unborn son had a 15 percent chance to live. His heart wasn’t functioning properly. It was beating at twice the normal rate, making it difficult to pump blood to his organs. He suffered from supraventricular tachycardia, also called SVT. The disease caused him to develop hydrops fetalis, a serious, life-threatening condition in which a fetus or newborn has an abnormal buildup of fluids in the tissue around the lungs, heart, or abdomen, or under the skin.

“I lived in the heart and vascular institute at Memorial Hermann Hospital downtown for about 4 or 5 months,” Boehme said. The doctors told her that she had three options: she could either let her unborn son die inside of her, or they could induce labor to give her a chance to say goodbye to him in person. Thirdly, she could try a medication that was dangerous to her own heart, and had a small chance of improving her son’s condition.

“I said, ‘I’m going to let God do whatever he wants to do, let’s try the third line medicine,’” Boehme recalled. Miraculously, the medication saved her son’s life, though he wasn’t in the clear. When Jayce was born, he experienced hydrops and was immediately rushed to the NICU where he stayed for about 6 weeks.

“His heart started doing a little better, but they had him on two medications for two years of his life,” Boehme said. His doctor eventually weaned him off to see how he would do, with the warning that SVT had a risk of returning around age 5 or 6. Jayce celebrated his sixth birthday this year.

Boehme is asking for donations that will allow her to take her son to regular visits with his cardiologist in Houston. “Having to go often to the cardiologist, because they do an EKG and echo each time, it gets extremely costly, and we’re of limited means.” Boehme said. “I just want him to be comfortable and I want to know that he’s OK, and I want to be able to keep on top of it,” she stated.

The money raised will also allow Jayce to visit his dermatologist, because unfortunately SVT is not the only concern in regard to his health. He also has a rare skin condition called, epidermolysis bullosa (EB), which is a connective tissue disorder that causes fragile, blistering skin. EB patients are referred to as ‘butterfly children,’ because their skin seems as fragile as a butterfly wing.

“He would get blisters on his knees when he started to crawl, on his fingers, on his hands, down his back from sitting in the car,” Boehme said. “His feet are the worst … he’s a trooper, but there are times that he cannot walk, so I have to carry him a lot.”

The biggest worry is his potential for internal blistering, and the possible infection that could result. “Overall, it’s just overwhelming and it’s scary,” Boehme said. “He’s my little soldier, he tries so hard, he has such a good spirit about him, and I’m just scared that I’ll lose him.”

The money donated will help this mom pay for her son’s bandages, creams, and special clothing. It will pay for transportation to and from clinic visits, as well as his needed medical attention, which could include a possible surgery called SVT ablation. It will go towards making this young child’s life as comfortable and as safe as possible.

Boehme said she decided to make the donation page after Jayce confronted her about his conditions. “We were sitting at the bottom of my stairs and he goes, ‘mommy, why can’t I have normal skin and a normal heart like all the other kids?’ … That was the first time he ever really cognitively asked me,” Boehme cried. “All I could really tell him is, ‘baby, you’re just special, your skin and your heart are just special.’”

To help, visit Jayce’s GoFundMe page here.

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