Precerpt from Raising God’s Rainbow Makers The Surgeon Who Didn’t Need a Syndrome Name or a Protocol
In the early 1980s, before CHARGE Syndrome had a name, before anyone knew that a cluster of anomalies belonged together, before “multidisciplinary clinic” was even a phrase, there was just a little boy with a tracheostomy and a mother who refused to accept the limits of geography.
Doah was five. We were living in Pittsburgh, and the message was clear: there was nothing more to be done. His airway was too narrow, too fragile, too complicated. The local surgeons were skilled, but this was beyond their experience. No "implication" hung in the air; they said it out loud and multiple times (because I pushed back). There is no hope for Doah. In December 1980, when I asked about future expectations, the head of ENT put it bluntly, "His future is days, weeks if you are lucky."
I didn’t accept it.
So, I did what any mother with a medically complex child and no internet would do: I marched myself into the medical school library, found the Journal of Otorhinolaryngology, and started reading. Page after page, issue after issue, until one name kept appearing — Robin T. Cotton, Cincinnati Children’s Hospital. He was writing about subglottic stenosis, about airway reconstruction, about techniques no one else in the country was attempting.
He was the only one.
By then, the doctors in Pittsburgh had responded to my complaints about strident breathing and frequent apnea requiring CPR at home (and no one who took me seriously for months). At six months, CB had had a tracheotomy. The apnea mostly disappeared, but still sometimes he would get mucous plugs and suctioning did not work, so I would have to become creative. All the other babies with tracheotomies that year died (well, as far as I knew, since I had founded the Western Pennsylvania Apnea Association, and supposedly all the trached children's parents joined -- all 11 of them; it was not a common thing to trach babies back then; it may not be a common thing today, either). That tapestry made the doctors confident that sooner rather than later we would lose Doah, and that sent me on the quest that brought Dr. Cotton in view.
I called him. I reeled off Doah’s entire surgical and medical history from memory — dates, procedures, complications, two clinical deaths, everything. He was impressed, but more important, he listened. He understood the pattern before the syndrome existed. He didn’t need the label “CHARGE” to know what mattered.
And then, life added its own twist: I fell and broke my back. I couldn’t travel. So, Doah went to Cincinnati with my brother, who lived near Columbus — a medically fragile child in a house painter's dinged but trustworthy old truck, headed to the one surgeon in the United States who might be able to help him.
Years later, when we were living in Washington, D.C., the head of ENT at National Children’s Medical Center walked into an exam room where another doctor was seeing Doah. He didn’t come to examine my son. He came to meet me.
“I just wanted to shake the hand of the mother who found the only doctor in the country who could have saved her son,” he explained as he extended his hand.
He wasn’t exaggerating.
But the most unforgettable moment came in Cincinnati.
The first night, Doah decannulated himself. Pulled the trach out. The alarm didn’t go off because he kept breathing. No one noticed because he had pulled the blanket over his head. A resident called me, voice shaking, to confess what had happened and asking for permission to do whatever might be needed, which might include replacing the tracheotomy.
Dr. Cotton examined Doah the next morning. He had two surgical plans ready — a cricoid split or a laryngeotracheoplasty. Both were major. Both were expected. And, not expected, replace the tracheotomy if necessary.
He did nothing.
Instead, he confirmed that Doah could breathe on his own and said, “Send him home." Over the phone, he advised me, "Keep your CPR skills sharp for a while, but I see no need to operate on a breathing child.”
That was it. No drama. No heroics. Just a surgeon who trusted physiology over protocol.
And then life moved on. There was no CHARGE clinic yet (Dr. Cotton founded that many years later.). No long‑term follow‑up; none was needed. No reason to stay in touch.
Dr. Cotton never knew that the little boy he decannulated — the one who arrived before the syndrome had a name — grew up. That he lived. That he is now 46 years old.
One day, when I have the full middle‑age chapter from Stanford, I may send him that update. Not because he owes us anything but because Doah’s survival is part of a story he helped write — a story that began before the research and textbooks caught up.
A story of a child who breathed on his own before anyone believed he could.
A story of a surgeon who didn’t need a diagnosis to save a life.
A story of a mother who refused to accept “nothing more can be done.”
A story that still isn’t finished.
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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