Precerpt from Raising God's Rainbow Makers: Doah and Three Famous Doctors
The Right Doctors at the Right Time
Doah’s story is threaded with miracles, but some of the most important ones came wearing white coats—two young physicians who were not yet famous, not yet the giants they would become, but who saw what others missed and dared to think differently.
When the doctors in Pittsburgh had given up on Doah—when they told me I was immature for refusing to accept his death, when they tried to take custody so they could perform experimental procedures his own pediatrician warned were dangerous—we packed up and left. We went to Boston, to Dr. Arnold Colodny, listed as one of the two top GI doctors in the USA at the time. Dr. Colodny? He had been Noelle's doctor when we were living in Boston. And we loved him. Her did so much good for Noelle! So, I picked up the phone and called him. If we showed up in Boston, would he take Doah? Yes, he said, not knowing we were planning to steal Doah from the hospital, metaphorically fly to the airport, and literally fly out. Having Dr. Colodny's willingness to care for Doah gave me the last bit of courage I needed for the theft.
While we were flying there, the Pittsburgh hospital, having found out where we were going (likely from the pediatrician, who could not lie) called the Boston hospital and arranged for their own surgeon to take over Doah's care upon arrival. Shock! I refused to sign the paperwork and insisted on Dr. Colodny. They intern told me that Dr. Colodny dealt with lower GI (my daughter's issue) only now, but I reminded him that Dr. Colodny was a smart man, used to work with upper GI, and certainly had not forgotten how to take care of a sick baby. In the interim, I told them, I was going home to my childhood home in Maine overnight and would be back in the morning. "Ask him!" I said in parting.
When I came back in the morning, the same intern was on duty. "Who are you?" he asked. "Dr. Colodny said yes."
"I'm just a parent," I said. "Dr. Colodny's just a good doctor."
The Pittsburgh-connected surgeon with scalpel at the ready was dismissed, and Dr. Colodny took over. The first thing he did was to nix the procedure as too dangerous and not necessary. In one month under Dr. Colodny's care, Doah, who arrived malnourished and labeled "Failure to Thrive," gained four pounds and had rounded out quite nicely. starting to thrive.
In Boston. we encountered a\ young physician just beginning to rise: Dr. T. Berry Brazelton. At that time he was simply “Dr. Brazelton,” not yet the household name he would become. He was Doah’s pediatrician at Boston Children’s, and he was the first to recognize Doah’s multisensory difficulties. He showed us what overload looked like, what it did to Doah, and how to help him navigate a world that assaulted him from every direction. He gave us the psychological framework we needed to raise him into the functional, beloved member of the San Ignacio community he is today.
About a year later, after the last trached baby in Pittsburgh had died, except for Doah. it was again time for action. I had located in Cincinnati a young ENT surgeon named Dr. Robin Cotton, who was still early in his career and not yet the legend he would become. But he was already writing incredible articles about stenosis in the medical journals I had been reading. I called him, rattled off CB's medical and surgical records from memory, and he agreed to see him -- and even thought it was not an extremely complicated case.
Dr. Cotton did something no one else had done: he had understood what was happening. He recognized that Doah’s subglottic stenosis wasn’t genetic at all or part of a birth defect (as doctors in Pittsburgh had said)—it was caused by aspiration. That single insight changed everything. Suddenly, there was hope, not fantasy hope, but grounded, anatomical, practical hope. If aspiration caused the narrowing, then growth could relieve it. And if growth could relieve it, then Doah had a future.
As it turned out, Doah took matters into his own hands. On his first night at the hospital in Cincinnati he pulled out his trach tube, pulled the blanket over his head, and slept peacefully until morning. Self-decanulated! No one knew. When the nurses discovered what he had done, they panicked. Dr. Cotton did not. He looked at this breathing child and said, matter-of-factly, “I am not going to trach or perform any other operation on a breathing child. He will outgrow this. Keep your CPR skills ready.”
He was right on both counts. Doah did outgrow it. And until he did, we needed those CPR skills more often than I liked.
Today, Dr. Cotton is world-renowned, retired, and credited with founding the first CHARGE Syndrome clinic—ironically, Doah was in Cincinnati before Dr. Cotton, we, or anyone else knew what CHARGE was or that Doah had it. But he knew airways, and because he did, he saved Doah’s life by giving us the knowledge and confidence to care for him safely. When Stanford learned that Doah—now their oldest CHARGE patient, and perhaps the oldest anywhere—had once been treated by Dr. Cotton, they were astonished. So was Children’s National in Washington, DC, when we moved there for work. The head of ENT asked to shake my hand, saying I had found the only doctor who could have saved my son.
Doctors make a difference. The right doctors make the right difference.
We were lucky—but we also made that luck. We refused to settle for less. We kept searching, kept asking, kept researching, kept combing through medical journals, kept moving when doors closed. And through all the oopsies and near-misses, God quietly kept the slip-ups from becoming tragedies, probably far more often than we ever knew.
Book Description:
Raising God's Rainbow Makers
A Family Memoir of Grace, Grit, and Growing Up Different
What happens when a military family welcomes four children—each with wildly different needs—into a world not always built to support them?
In Raising God’s Rainbow Makers, one mother shares the remarkable journey of raising two children with complex disabilities—one with spina bifida, one with CHARGE Syndrome—and two intellectually gifted children, all born in different states during years of military life. Through medical crises, educational challenges, and societal roadblocks (both intentional and unintentional), this honest and inspiring memoir tells the story of how one family built a life of strength, compassion, and resilience.
With warmth and unflinching honesty, the author reflects on emergency surgeries, IEP battles, unexpected victories, and the fierce sibling bonds that formed in the face of it all. The children—now grown—bear witness to the power of support, faith, and never giving up.
This is not just a story of survival. It is a celebration of difference, a chronicle of hope, and a powerful testament to what love and determination can build when the world says "impossible."
Keywords:
Parenting memoir; Special needs parenting; Raising children with disabilities; Military family life; Family resilience; Inspirational family story; Faith-based memoir; Coping with medical challenges; Sibling support stories; Gifted children; Spina bifida; CHARGE Syndrome; Hydrocephalus; Congenital disabilities; Complex medical needs; Pediatric neurosurgery; IEP and special education; Gifted education; Educational advocacy; Inclusive education; Hope and healing; Courage and strength; Love and perseverance; Raising different children; Disability acceptance; Parenting through adversity; Overcoming barriers; Finding joy in hardship; Special needs journey; Family unity and support; For parents of disabled children; For parents of gifted children; For educators and therapists; Christian parenting memoir; For families facing rare diagnoses; Real-life parenting stories; Memoirs about raising children; Stories of medical miracles
For more posts about Elizabeth and her books, click HERE.
Read more stories -- and photos -- about the Mahlou family in the blog (no longer maintained), Clan of Mahlou.
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