A little over a year ago, on Nov. 5, 2015, little baby Leah surprised everyone — including her young parents Kristel and Craig Storm of Saugerties — by coming into the world six weeks earlier than expected.
Leah was delivered by c-section at Vassar Brothers Medical Center, quickly following an ultrasound that indicated amniotic issues. Though a birth six weeks premature is no shocker, what the doctors told the Storms immediately after Leah’s birth was very shocking.
“They told us right away there were some things wrong with Leah while I was cut open,” said Kristel Storm. “Just think about that if you ever had a c-section … you’re on the table, they just cut you open. You hear your baby’s first cry ever, and they walk her over to you in blankets and say she doesn’t have a left ear, her vagina is not open so we are not sure if she is a boy or a girl but she does have an anus.
“Traumatizing, huh?” she continued. “Now just think how you would feel when you joked all along your pregnancy with your husband saying, nah it’s a boy, and they screwed up on the ultrasound. How would you feel being sewed back together and getting that news?”
Kristel has to stay at Vassar to recover from her surgery, so Craig drove up to Albany Med, following the helicopter that carried his frail newborn to that hospital’s neonatal intensive care unit. Kristel called Craig every hour. Craig let his worried-sick wife know that an ultrasound confirmed her gender as a female after it spotted two ovaries.
Storm and Craig soon learned that baby Leah had other, very serious, challenges. She was born with just one kidney that was barely functioning and was hit with a diagnosis of end-stage renal failure, as well as major heart problems, including several sizable holes in that most vital of organs. Craig admitted he stayed awake for days throwing up in Albany, overwrought with emotion and grief. Kristel said did not get to be reunited with her baby to hold her baby for three days. When she finally did, she completely broke down.
“Here I was holding her in my arms, like this is a little person I created, and I’m finally holding her, and I can start crying because it felt so good to actually hold my baby in my arms on my chest,” said Kristel. “I was playing with her hair and I was scared to hold her because all the tubes that she had on. It was a lot of wires and I just felt very overwhelmed. … But I felt also very blessed to actually be holding my baby in my arms after two days of not being able to hold her.”
Kristel was forced to take a leave of absence from her role as a team leader at Target to remain with Leah. Craig’s longtime employer, Krause’s Chocolates, allowed him to take off from work for several months.
The very weak baby Leah underwent a dicey surgery to have a special catheter surgically implanted for the daily dialysis she would need to endure to stay alive. The hospital staff and parents labored over her with dialysis, oxygen, nasogastric tube, ceaseless bundles of wires and telemetry, monitors and more. After several months of working with the nephrology team and Leah’s coming down with terrible infection in the catheter site, the heart-wrenched parents were told there was nothing more that Albany could do. They were told to take baby Leah home and let her die with them, probably within a week or two. (The Storms noted the date of the interview coincided with the one-year anniversary of that discharge — Nov. 30.)
Kristel and Craig weren’t giving up on Leah. They asked to be sent to Boston Hospital’s NICU which has a dedicated nephrology department. They were advised the procedure they were plotting there had a “50/50 chance” of survival, but they both agreed that was 100 percent better than the zero percent chance Leah had staying in Albany.
“We got in for the next day, Dec. 1, 2015,” said Kristel. “Leah was on her way in the ambulance and we were [on our way as well]. Halfway to Boston, we stopped at a rest stop, and guess what we saw — the ambulance [carrying Leah]. We knocked on the door and they let me see Leah. What where the odds? Craig and I parked the car and we went into the hospital once we got to the elevators we saw the ambulance team and they said she is all set upstairs … I had never felt so relieved since Leah was born. I knew this was the place to help our baby.”
And that’s exactly what Boston did. I sat down with Mom and Dad — both with matching “Super Parent” T-shirts — and a bright-eyed, flirty, affectionate 1-year-old baby Leah, for an interview and reporter/baby snuggle session. (A very standard interviewing technique.) Leah is about the size of a four- or five-month-old, with similar motor skills. She is alert, playful, and, objectively speaking, super snuggly.
She’s currently on 12 different medications a day, including several shots. Her typical day is not unlike other babies, starting at 5 a.m. with Daddy, and then breakfast with Mommy and playtime. But then she sees a speech pathologist to help with swallowing, a physical therapist, an occupational therapist and a social worker and does 12 hours of dialysis every night. She also has the nasogastric tube in at all times. Leah is scheduled to have open-heart surgery in January that will not only correct her heart and artery issues, but also repair a faint artery running through her left arm. Thanks to dad’s kidney in an upcoming kidney transplant, she will be granted a regular life span. Storm said that around age 20, Leah will require another transplant, and then likely one more thereafter.
Despite both being well under 30, Craig and Kristel have been together 10 years. They desperately wanted several children, as Craig comes from a family of nine and they both come from warm, loving families. The married pair tried for two years to conceive, and had no indication there were any problems as Kristel’s pregnancy progressed.
Because Leah’s insurance is Medicaid and Medicare, the couple is unable to pay for the genetic testing needed to see Leah’s condition is hereditary — this has thrown a wrench in their family planning. Storm says that she now has interest in becoming a nurse to work in nephrology and with babies. But the costs of medications, commuting to doctor appointments in Albany and Boston are staggering, said Craig, noting gratefully that his employer has been enormously supportive with donations and even a donation jar on the counter in their Saugerties store.
The larger community is helping too. Rage Hair Salon and Dream Weavers on North Front Street in Kingston are offering a “Blow Out Benefit” on Sunday, Dec. 11 from 10 a.m. to 3 p.m., with the proceeds of $30 hair blow-outs going to help offset the couple’s astronomical costs. No appointments are needed to book a blow-out, they are on a first-come, first-serve basis, and donations are welcome
If you want to follow baby Leah’s story and progress on Facebook, you can like her page, “Leah Storm’s Journey to a Kidney Transplant.” If you wish to write the couple or donate money, their mailing address is 262 Main St. Apt. 2, Saugerties, NY 12477. They can be reached at (845) 332-2621.
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