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Noah's medical follow-up
IN FRANCE
From 2012 to 2016
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Since September 2012, Noah Sitbon has consulted various specialists: dermatology, maxillofacial, hematology, hepato-pediatrics, cardiology, orthopedics, ophthalmology, orthodontics and neurosurgery.
Despite these examinations, no medical or surgical improvement was observed. Noah and his sisters mainly suffer from cutis-marmorata, a rare vascular anomaly.
Dr Hadj-Rabia Smail, dermatologist at Necker hospital, highlights the rarity of this variant, complicating surgical interventions due to the risks of hemorrhage and necrosis.
Dr. Galliani Eva, maxillofacial surgeon in Necker, has been following Noah since he was 9 months old for cutaneous aplasia of the vertex with bone loss. Various dressings were prescribed: Algoplaque, Mepilex, Duoderm, tulle gras, vaseline, flammazine, silver nitrate and cleaning with physiological serum.
Dr Pannier Stephanie, orthopedic surgeon in Necker, observed hypoplasia of the phalanges in Noah: absence of phalanges and nails on the toes. An intervention is considered but delayed by the cutis-marmorata. Despite this, Noah walks and runs perfectly.
Dr. Rocher, an ophthalmologist in Trousseau, did not detect any cataracts, but Noah wears glasses to correct his astigmatism. A follow-up every four months has been in place since he was 12 months old.
In orthodontics, Noah awaits the loss of his baby teeth. He will be followed at the Rothschild hospital for the absence of five permanent teeth.
Neurosurgeons Drs. Federico Di Rocco, Zagzag, and Constantini detected no brain abnormalities.
Since 2016
December 2016 - Deterioration
A few days after the gala, Noah's wound began to deteriorate, becoming festering and bloody.
2017 to 2018 - Repeated failures
An appointment in neurosurgery is arranged with Dr. Syril James and Dr. Eric Arnaud, a craniofacial surgeon at Necker. They decide on a double full-thickness skin graft taken from the groin.
Unfortunately, the grafts necrose within a week, leaving an even more fragile and extensive wound. The sutures are removed two months later for fear of worsening the wound.
Dr. Syril James sets up home hospitalization (HAD) for daily care and pain management, with morphine and MEOPA gas for Noah.
A second surgery, involving the placement of two tissue expanders, is another failure. The removal of the dressings without sedation or pain relief is traumatic for Noah due to Dr. Arnaud's lack of delicacy.
Less than 10 days later, all the equipment is infected. Noah is admitted as an emergency and operated on by Dr. Syril James, who confirms the infection and a hemorrhage lasting more than 20 minutes. The equipment is removed, and Noah is devastated by this failure.
The neurosurgery department withdraws from Noah’s case, referring him back to Professor Arnaud Picard, a maxillofacial surgeon, who admits he doesn't know what to do for Noah.
A clinical trial with fish skin from Scandinavia is proposed, but after five months, no improvement is observed. The wound enlarges, and Noah experiences several hemorrhagic bleeds.
September 2018
Professor Arnaud Picard informs us that he has reached the limits of his abilities and authorizes us to try treatments at home.
September 2019
Noting the benefits of the swimming pool, we started a protocol based on chlorinated water. The results are very positive after a few weeks, with a reduction of the wound by more than half.
Unfortunately, the protocol is only effective for one year and no longer produces positive effects to this day.
For economic reasons, HAD hospitalization at home care will end overnight.
Indeed Noah does not heal and Noah costs too much money!!!
Leaving us in total disarray and thus depriving Noah of quality, pain-free daily care.
We find ourselves alone facing daily medical care without help or presence of the medical profession.
Since then, we continue to search around the world for surgeons who can rescue Noah from this infernal abyss.
After 4 months of exchange by email, Canada will decide to put an end to our exchanges.
In Spain a surgeon will make us understand that the Necker hospital is blocking our possibilities because they have a monopoly on rare diseases in France.
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An OPERATION full
OF HOPE IN THE USA
In 2021, our story turns to the USA, specifically New York, where a two-stage surgery has been proposed by a full team of surgeons and doctors.
The cost is enormous.
But Noah's life is priceless!
We need your help more than ever!
#TogetherSaveNoah
Noah, suffering from Adams Oliver Syndrome, has bone deficiency and skin aplasia on the skull, leading to infections and hemorrhages.
Gli'Hope found a surgical team in NYC to save him.
Noah'S blog
in New York
Periodically find news from Noah, the association, and the progress of our projects in New York
