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The story of Noah SITBON born with
Adams Oliver Syndrome
story by Laetitia SITBON (Mom and Vice-President of the association)
October 15, 2010
Immense happiness: my pregnancy test is positive! Our third baby is coming. My husband and our two eldest children, Shaï and Ilan, are delighted.
April 2011
The pregnancy is going well, I am calm after two closely spaced pregnancies. At the sixth month, hospitalized for a threatened premature birth, I received injections to mature the baby's lungs. Fortunately, the exams are good and I return home with the obligation to rest.
June 18, 2011 - 2 a.m.
Time to give birth: head to the clinic. Without an epidural, the pain is excruciating and the labor is very long. The baby's heart rate slows dangerously, but the replacement gynecologist does not come. After nineteen hours of suffering, I was taken to the operating room, my baby's heart having stopped.
June 18, 2011 - 9 p.m.
Rudy, my husband, can finally see our son after two hours of waiting. Our baby weighs 2,940 kg for 47 cm.
Joy quickly gives way to amazement:
“His left foot is incomplete, his nails are missing, and his head... What's going on? »
"I don't know, don't worry, his foot will grow and his head must have been hurt." »
The gynecologist replies: “Nothing serious, consult a doctor after discharge. »
June 19, 2011
First awakening with Noah. I'm seeing him for the first time. His head… “They dropped him?” » Rudy is anxious and doesn't know what to answer. I have a premonition: I hold my newborn close to me, feeling that we are going to be separated. The pediatrician remains calm, suggesting that Noah was injured in the uterus, but the atmosphere remains unusually tense.
June 21, 2011
Finally, my gynecologist arrives. He has followed me for years, knows me by heart, and me too. And what I read in his eyes only confirms my bad feelings. He orders Noah to be transferred to a specialized institution.
Head to Necker Hospital. Before leaving, I overhear the pediatrician let out a dire omen: “This baby has no chance…” I ask him if it's Noah he's talking about. With a resigned sigh, he simply hands me his health record. For Rudy "it's the Adams Oliver Syndrome, I'm sure" he told me after scouring the net.
With a head start on the medical profession, he has already found the right diagnosis.
Once baby is ready, we get into the ambulance, Noah sleeps on top of me. For my part, I prefer to wait to know the judgment of the Necker doctors.
Arrived at the dermatology department, a doctor walks towards us before immediately turning around. Back 5 minutes later, he is surrounded by a procession of other doctors. One of them takes the little one from me and says, “It's very serious, your baby is sick, he's certainly not going to survive! ". Tears run down my face, Rudy turns livid.
After losing his grandmother, whom he considered his mother, a month earlier, he wonders why fate is so violently hounding us.
July 2011
Noah is hospitalized in neurosurgical intensive care for a month because of the risk of hemorrhage, which may be overwhelming.
He is finally allowed to go out, on the condition of bringing him back every day to redo his head dressing. All precautions must be taken for this delicate operation, during which the wound is moistened with petroleum jelly.
August 2011
Fifteen days after his release, Noah was again hospitalized in the same department. The sinus artery is about to burst. It will be necessary to wait three weeks before dismissing any risk, and to be able to recover it.
September 2011 - September 2012
From medical visits to hospital examinations, Noah's life mainly boils down to frequenting a multitude of doctors, all equally powerless in the face of his case...
Yet, despite his serious condition, I challenge anyone to see Noah as a sick child. If it is not the bandage which bars his hair to him, nobody could with his simple sight imagine the weight of his suffering. Our small victory over the disease is to see that beyond the pessimism displayed by the medical profession at birth,
Noah is growing well, eating well and walking perfectly despite his three toes malformation. He loves football and begins to talk like all children his age.
But the consolations end there. Impossible for example for him to attend a school, to make friends of his age or to risk being in contact with the slightest microbe. In any case, for insurance reasons, no crèche wants to include him in its workforce. Even accompanied by an adult who would be completely dedicated to him; even if he wears a custom-made helmet to protect him from the slightest shock. At almost two years old, loneliness already weighs heavily on her. It must be said that the company of doctors is not necessarily the most fulfilling there is for a little man of his age .
At present, no doctor wishes to comment on his future. Noah grows up, without seeing his state of health evolve and his environment open up to the world. His father and I are destitute in front of
the reluctance and rudeness of some members of the medical staff. By dint of resistance and hostility, we decided to stop treatment at Necker.
Fortunately, in our obstacle course, we found a few warm and dedicated people who took Noah's situation to heart. I am thinking in particular of Doctor Galliani from the hospital
Trousseau, of a rare softness and availability. She does everything possible to help us, without hiding her inability to find the right therapy.
I would also like to pay tribute to Marie-Hélène, an extraordinary nurse. Always present in case of problem or for the slightest advice, she even came to the house to change the dressings
of Noah. It doesn't matter whether it's during her free time or even after her night shifts, she has a real attachment to Noah.
Since September 2012
I go around the plastic surgeons in a stroller with my son. Giving up is unthinkable, so we knock on all doors, even the most distant, to try to find our "savior".
We have great hopes for the creation of this association.
If she can make you aware of the fate of Noah, as well as your parents, friends, family, colleagues, relatives and those not so close; mediate the medical enigma it represents and why not, interest a
Professor anxious to find the miracle cure, then indeed we will all have accomplished “A miracle for Noah”.
The family is growing. In 2012 and 2013, I welcomed my sisters, Rachel and Jessica , who unfortunately suffer from the same syndrome but in a less serious form than their big brother Noah.
Galleries
Noah 10 years old.. And already so many trials. Discover his story in pictures..
 Noah Sitbon le 18/06/11Noah Sitbon à sa naissance le 18 Juin 2011. Copyright - Un Miracle pour Noah |
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 Plaie de Noah à sa naissanceCopyright - Association Un Miracle pour Noah Né atteint du syndrome Adams Oliver |
 Noah SITBON à sa NaissanceNoah Sitbon à sa naissance le 18 Juin 2011. Copyright - Un Miracle pour Noah |
 Scanner Noah SitbonCopyright - Un Miracle pour Noah Né Atteint du Syndrome Adams Oliver |
 Hospitalisation Hopital NeckerCopyright - Association Un Miracle pour Noah Né Atteint du Syndrome Adams Oliver |
 Premiers Soins NeckerCopyright - Un Miracle pour Noah Né Atteint du Syndrome Adams Oliver |
 Premiere sortie d'hopitalCopyright - Un Miracle pour Noah Né Atteint du Syndrome Adams Oliver |
 Hospitalisation DebréCopyright - Un Miracle pour Noah Né Atteint du Syndrome Adams Oliver |
 Evolution AplasieCopyright - Un Miracle pour Noah Né Atteint du Syndrome Adams Oliver |
 Casque NoahCopyright - Un Miracle pour Noah Né Atteint du Syndrome Adams Oliver |
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his story Abroad
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ISRAEL
As of May 2013, Doctor Constantini, neurosurgeon in Tel Aviv Israel, read Noah's medical file, and according to his study no surgery should be considered due to its complexity.
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SWITZERLAND
Marie Hélène Amici, nurse who followed Noah SITBON since he was nine months old, changing dressings and other daily care, she moved to Switzerland where she presented the case of Noah SITBON to a pediatric neurosurgery department. The service offers the following intervention: rotation of scalps, the risk being already known in view of the poor aesthetic results, the project was abandoned.
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UNITED STATES
Dr. Zagzag, specialist in neuropathology and neurosurgery at NYU Pathology Associates, examines Noah Sitbon's medical file and travels to Paris to examine him.
Back in NYC, he assembles a team to evaluate a surgical procedure, but the complexity of the case makes the operation impossible.
Faced with the worsening of Noah's condition, Dr. Zagzag proposes a unique surgical protocol: break the bony edges of the skull, create a prosthesis in acrylic cement, graft pilfered skin, and induce a thermal shock to avoid a cutis marmorata crisis.
This experimental intervention has never been performed and can only be done in the United States, with high medical costs.