Super Léo

This is Super Léo’s story written by his beautiful mom, Adeline.

When we found out we were expecting a child, we were elated. Beyond elated. And it never occurred to us that there could be anything wrong with our baby. But at the 22 week ultrasound, something wasn’t right. Our baby was showing signs of a bowel obstruction. That day, the technician said to us that we were going “to go through a lot with our pregnancy” and that we did.

Tons of tests were run to determine if it was only a bowel obstruction or if there were other things. All the tests came back negative, but the bowel obstruction was getting worse. Our baby wasn’t absorbing his food which caused my amniotic fluid to start building up. I was having serious breathing issues with all the pressure that the excessive fluid was putting on my lungs. There were high risks associated with his birth because the excessive fluid had stopped him from dropping and the water breaking could potentially be traumatic. And before our baby was even born, we met with a pediatric surgeon who explained to us that he was going to be taken from us right after he was born to have surgery.

And yet Léo’s birth was nothing but joy. Meeting him for the first time, I recall falling in love with him instantly.

img

img (3)

He had surgery soon after he was born. The surgeon cut his bowel to clean it out, but he didn’t reconnect the two ends. Léo had an ileostomy for over two months. We started the feeds a few hours after the surgery, but it didn’t go well. Léo’s bowel still didn’t seem to absorb the food properly and he constantly had diarrhea which caused him to dehydrate, so we had to complement his feeds with intravenous fluids. The hospital didn’t want to discharge us before we could stop the IV fluids and get rid of the central line we used to administer them. But months after months after months, we didn’t seem to make much progress at all, even after the two ends of his bowel were reconnected and he started using his whole gut to process his feeds.

img (1)

We also found out other things were wrong. Léo has a skin disease called ichthyosis, causing his skin to go red and extremely dry. He was constantly itchy and would wake up at night screaming from the itchiness. He also was diagnosed with a hearing loss and our doctors started talking about cochlear implants. He had developmental delays which were caused in part by his long term stay at the hospital, but we were starting to realize it probably wasn’t just that.

We continued to run tests and when Léo was seven months-old, we finally received his diagnosis: he was one of four people in the world with MEDNIK syndrome. What he has is a genetic, metabolic condition which affects his skin, bowel, hearing, brain and liver.

The feeds were still not progressing well, so we finally received a training to administer the IV fluids at night ourselves. And the day before Christmas, on my birthday, a few days before he turned nine months, Léo came home from the NICU. He had a central line and a gastric tube and we had to learn to take care of our baby on our own, including both the regular things but also all the medical procedures that he needed, but it was the most beautiful Christmas we’d ever had.

img (2)

It has been over a year since Léo’s come home now. He is on an experimental treatment for his condition and he is doing wonderful. He is exceeding all expectations developmentally and he is a very happy little man. Three months ago, we finally got rid of his central line and we couldn’t be happier and more proud of him.

There were times when we feared for his life and the first year of his life was definitely a rollercoaster. But Léo truely is the strongest person that I have ever met. He has taught us about being resilient and about enjoying our lives and being a family. We are confident in his future and I know he will accomplish great things. He already has.

4 replies
  1. pat tang
    pat tang says:

    you might like to see if the below products can help with Leo’s skin condition…..

    mcarthurnaturalproducts / Dermasilk /Joe Landolina came up with Veti-gel – It heals wounds instantly (products that might help)

    Reply
  2. pat tang
    pat tang says:

    you might like to see if the below products can help with Leo’s skin condition…..

    mcarthurnaturalproducts / Dermasilk /Joe Landolina came up with Veti-gel – It heals wounds instantly (products that might help)

    Reply

Leave a Reply

Want to join the discussion?
Feel free to contribute!

Leave a Reply

Your email address will not be published. Required fields are marked *