The results have arrived!

LEO DOESN’T HAVE HIRSCHSPRUNG’S!
!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

That day, a half conscious Leo smiles at his mom for the first time. ☺

Pneumonia.
Antibiotics.
Increased parameters for ventilation…

A biopsy is done to determine whether Leo has Hirschsprung’s disease.

The nightmarish image won’t go away:
" . . . after removing the part of the colon that lacks neurons, the rest of the colon is pulled through to the outside of the stomach and sewn to the skin with the mucous membrane exposed. This creates an „abdominal anus”, or a stoma. Excrement passes through the stoma into special bags glued to the skin around the stoma."
Source: Polish Wikipedia

Hieronymus Bosch "The Garden of Earthly Delights" [fragment]

Leo’s parents receive invaluable emotional support from prof. A.D., who has an exceedingly rare gift for telling the difficult truth in a gentle way. She is one of only a few who have the courage not to turn away from hope. She allows herself to be optimistic. She believes in miracles.
If only every doctor had so much empathy, warmth and faith in medicine, the realities of the hospital would be much easier to bear.
We thank you!

A test for slow intestinal peristalisis shows signs of Hirschsprung’s disease (a lack of neurons in the large intestines).
The disease often accompanies CCHS.
Kiki Smith, Tale

While waiting for the most important results, Leo undergoes further tests.
The doctors rule out toxoplasmosis, cytomegaly, cystic fibrosis, EBV infection, heart defects, vascular ring anomalies, hypothyroidism, phenylketonuria and dozens of other unusual diseases with names that tell Leoparents little.

Every negative result is, on the one hand, good news.
On the other, it inevitably brings them closer to the curse.

Leo is sedated.
His sleep is not real. Sometimes, he opens his unconscious, sad eyes.
He is tangled up in dozens of cables, pricked, cut, covered in bandages, fed through a tube, intubated through his nose,
but he must sense that someone is always with him.

The ward is not a cheerful one.
All newborns. Several dozen of the worst cases in Poland.
The ones that other hospitals couldn’t handle.
And among them, little Leo.
Their everyday consists of reanimations, transfusions, tracheotomies, stomas, catheters, ventilators, IVs, dilations, transplants …
Every second, medical alarms sound.
Other than that, the ward is silent—the children here do not cry. They are unconscious, sedated, intubated, out of touch.
Parents aimlessly haunt the halls. Every so often, a mother runs off the ward sobbing.
And sometimes, a priest comes. And then it’s even quieter.
It was not supposed to look like this...
ANDY WARHOL, Mother and Child, from Cowboys and Indians, 1986

Leo’s DNA is sent off to a lab in Paris that specializes in Ondine’s Curse.
Until the results are back, Leo will be in a medically induced coma.
Maybe it will be three weeks,
Maybe a month,
Maybe six months,
Maybe a year. . . .

The second attempt at extubation fails.
There will be no further attempts.
No one believes that Leo be able to breathe on his own.