Awaiting a heart
By Deborah Moon Seldner
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"I was sitting beside his mother when the doctor told her Noah should go on the heart transplant list," said Sandy Baderman speaking about her 4-year-old grandson Noah Baderman, who already has had three open heart surgeries in his short life.
On May 28, the Pediatric and Neonatal
Doernbecher Transport Team took Noah and his mother Melinda Baderman from Portland to the Lucile Packard Children's Hospital at Stanford University Medical Center in Palo Alto, Calif., where Noah now is awaiting a new heart. Noah must remain near Stanford since a donated heart is viable for a limited time.
Born with hypoplastic left heart syndrome, Noah has had three open heart surgeries at Doernbecher. Now his right ventricle is failing and only a heart transplant can save his life. He is listed as 1B, the second highest level on the UNOS organ recipient list, and the only one in the Stanford region who has blood type A+.
"People don't understand how financially and emotionally devastating this is," said Sandy, mentioning feelings of separation, anxiety, helplessness "and the underlying thought he might not make it. ? but I'm not going there."
"The biggest problem is the family is divided now," said Sandy, noting that her son Ryan is in Boise, Idaho, caring for Noah's siblings Laurin, 13, Spencer, 5, and Nathan, 4. "Luckily Melinda's parents, brother and his wife, other brother and grandmother are there to help out, as Ryan does work and is trying to keep the bills paid."
Fortunately, between Idaho Medicaid and Ryan's health insurance the cost of the surgery itself should be covered, said Sandy. But she said there are many other expenses that aren't—such as phone calls, travel and even shipment of personal items.
"Ryan had to ship some things to Melinda in California. It's not expensive, but the 10 dollars add up when you are on an income that can't take much more," said Sandy, noting that the family has lost Melinda's income while she stays with Noah.
Though his family lives in Boise, Noah has spent a good deal of his short life at Doernbecher Children's Hospital in Portland, where he and his identical twin Nathan were born Oct. 6, 2001. Portland is the home of Noah's grandparents Sandy and Ron Baderman and great-grandparents Tillie and Hy Baderman.
The family has long ties to Portland's Jewish community. Tillie and Hy are long-time members of Congregation Shaarie Torah, where Sandy's late parents, Rose and Ernie Scharf, also were involved when Sandy was growing up. Sandy and Ron were married at Congregation Neveh Shalom and Ryan became a bar mitzvah at Havurah Shalom in its early years.
Sandy, who said she has never before been in the position of having to ask for help, said she is reaching out to the community for financial and emotional support.
"I feel guilty asking," she said. "I'm hoping I can relieve some of their financial burden and then down the road I hope to set up a foundation so other families won't have to reinvent the wheel. I can't help with the emotional aspect, but if I can help alleviate one of the stresses, I'd like to do that."
The family has established the Noah Baderman Heart Transplant Fund at US Bank, where anyone can make a contribution to aid the family.
Sandy said that she hopes someday the fund can launch a foundation to help families awaiting a transplant meet some of their incidental expenses.
"But my immediate issue is getting Ryan and his family taken care of," said Sandy. "The doctors are taking care of Noah—there's nothing I can do in that regard."
Ryan, who spent a long weekend with Noah and Melinda in California, sent out the following update on June 13 after returning to Boise: "So it is about time we have a good update. ? Noah is currently on the schedule to be discharged on Thursday to the care of Mommy and to stay at the Ronald McDonald house at Stanford. ?
"This does not mean that Noah is better, or will be. ? He is in severe heart failure. The first A+ blood type harvest will signal a page/cellular call to have Melinda return within an hour or so. Within a few more after that, Noah will undergo having a heart transplant. This is good news. Well, as good as news could be considering."
On June 16, Noah and his mother moved to the Ronald McDonald house to continue their wait.