Precerpt from Raising God's Rainbow Makers: Doah, Failure to Thrive, and the Importance of a Good Pediatrician
After Doah was released home from the neonatal unit, where he stayed for three weeks, given his premie status, life returned to normal. At least, normal for the Mahlou family. I returned to work while continuing to nurse Doah. As usual, everyone watched out for everyone else, Lizzie babysitting Noelle and Shane, and Noelle continuing with her special needs programming. Donnie, at that time, working on honing his photographic skills at the Art Institute of Pittsburgh (and using me for a model for his, yikes, nudes).
Dr. Paul, Doah's pediatrician, who knew the family and me well from all the kids, especially Noelle and her special needs, said Doah would do better at home and promised to release him as soon as he gained one ounce, which he did. Hope floated like a balloon.
It was so much easier having Doah home. No more trips to the hospital to nurse him. Crazy life continued on its crazy path, but at least it was a known path for us and, therefore, mostly comfortable, perhaps unreasonably so.
Doah visited his pediatrician regularly. On an early visit, Dr. Paul told me he was a little concerned about Doah but was unsure why. He said he was going to do some research and for me to call him at 6 a.m.
In the morning, a groggy voice answered, "Have you been up all night?" I asked.
"Yes," he responded, "and I don't have an answer. All I know is that Doah's features are dysmorphic, he has simian creases in his palms, and the only thing even remotely related, but that does not completely fit, is Fetal Alcohol Syndrome."
"Can I put that in lay terms?" I asked.
"Sure."
"My baby is ugly, looks like a monkey, and I'm a drunk."
What he did not know then is that Doah had CHARGE Syndrome. How could he know? At the time that Doah was born only one article had been written about the combination of defects that Doah displayed and that author suggested the term, CHARGE Syndrome, using each letter to refer to a defect, until such time as a name for the syndrome could be developed. The label, CHARGE, stuck, but Doah was 12 before enough literature and information became available that doctors could make the association. That was when Stanford University Children's Hospital (now Lucille Packard Children's Hospital at Stanford) sighed in relief and told us that they now had an explanation for Doah's range of oddities. There is no way Dr. Paul could have known back then. Even the medical researchers of the day did not know.
But he did know some important things. He knew that Doah was not progressing, that he stopped breathing frequently, and that he was not gaining weight. He zeroed in on the lack of weight gain. At six months, Doah weighed just 8 pounds, barely 4 more than he weighed at birth.
When I returned to work, I nursed him only in the evening and at night. When I was not there, Donnie fed him formula in a bottle. With a little sleuthing (and a good amount of experienced insight), Dr. Paul noted Doah as a "failure to thrive" case due to ability to process formula adequately, and so, later, when I was called up for duty in Puerto Rico for a few weeks by the US Army, I had to find a wet nurse for him while I was gone.
But, before then, Doah ended up in the hospital again. He had one of his breathing difficulties -- strident breathing for which I had brought him into the ENT clinic before only to be patted on the head, told I was a neurotic mother and sent away -- while Noelle was at a followup at the spina bifida clinic, where the doctors knew me.
"What is wrong with the baby's breathing?" asked the clinic coordinator.
"Oh, nothing," I replied. "The ENT clinic says this is normal and I am neurotic."
"This is not normal, and you are not neurotic," she said and walked me to the clinic. There Doah promptly stopped breathing for the resident. who, panicked, threw him, blue-faced, back into my arms, saying that he had to go get a "real" doctor. Had I called a resident not a real doctor, that would have been sacrilege!
The "real" doctor, the head of the ENT clinic showed up quickly, but I had already administered CPR and Doah was breathing. Now, not stridently.
"Has he ever done that before?" asked the ENT chief.
What? You don't have his records? That is what I wanted to say, but I just answered, "Several times a day, more often at night."
So, they admitted him, and the fun began. The nurses were told he was to be fed only every four hours -- formula. I told them I would be nursing him every two hours, like he usually ate, during the day. In thundered a hulk of a woman, who scolded me and said that the hospital schedule was every four hours and that was when he would be fed and that he would be weaned onto formula.
Had they not asked for his pediatric records? Of course, they had not, but she did not need them. She had her own program for him.
"So, this is for the convenience of the hospital and not for the good of the baby? Do I understand right?"
"No," she barked. "I must be present for all feedings, and I cannot be here every two hours."
"So, who are you? What is your position? Your specialty? What are you assigned to my baby?"
"I am the feeding consultant," she threw her chest out in pride.
"Ah, consultant!" I sighed with overt relief. "So, you are not part of the hospital staff. You have been brought in as a consultant. In that case, you are dismissed. I do not need or want a feeding consultant for my baby." At that, I picked up Doah and started nursing him.
She huffed out, and soon the charge nurse was in the room, telling me that I was no longer allowed to nurse Doah because he was "failure to thrive!"
I called Dr. Paul. Dr. Paul called the hospital administrator. The hospital administrator called a meeting of all the players in Doah's care.
We sat in a circle, Dr. Paul beside me and listened to the pontifications of the staff, especially the feeding consultant. Then, Dr. Paul calmly and firmly said, "The baby is failure to thrive because he cannot absorb formula. Feedings four hours apart are inadequate for him. I support the mother's right--and need--to nurse him, and let's make that every two hours."
That was the end of it. I did not have to say a word. That is the value--and blessing--of a good pediatrician.
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
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