Jonas Hamili

Jonas’ Story

 “It has been a roller coaster period, but I wouldn’t have changed it for a million.”

Jonas Hamili, Isochrome 18q mosaic, 7/25/2013, Lyngdal, Vest-Agder, Norway

Three years update 8/1/2016:
It has been a lot to go through, but jonas is here with us. When Jonas was two years old I was pretty desperate to get some answers, because he had lots of apnea related to food/reflux/epilepsy. The doctor in our old hospital said central apnea, they said obstructive apnea, and I was sure that was not the issue. Finally after
lots of phone calls, a doctor said no problem we will find out. Two days later he confirmed a diagnosis: eating induced spasm epilepsy. A year after our boy is glowing, alert, smiling and happy. He does have issues with reflux so we need to do the Nissen fundoplication, but his life
is changed totally. We love him so much and look forward for years with him:)

Original text: We knew our son had full trisomy 18 before birth. After another test he was confirmed to have isochromosome 18q. Before birth the genetics told us he wouldn’t survive, but we followed our feelings, and wanted to give our boy a chance to decide himself. We had a lot of scans before birth, but they couldn’t find any big issues. We knew he had radial dysplasi in one hand, but everything else seemed to be fine. We had a c-birth. It was planned, and we had a birth plan where the doctors promised to give him ALL help if needed.

When he came he had 9-9-9 on apgar score, and needed no help. We were beyond happiness 🙂

We stayed at the hospital for 14 days, and came home with a boy feeding by bottle. 4 months old we had a surgery because of intestine hernia. Everything went fine.

7 months old he had loaded with gas in his intestine/stomach and he started to trouble with breathing, and had rare seizures, the doctors didnt understand. They wanted to give him up. Instead we fought for him and got advice from experts in USA. ( We live in Norway.) So after another months he got VPAP for sleeping and also G-tube to get rid of the gas. Our baby didn’t burp the gas out, and getting the gas out the other way was really hard for him..

It has been a roller coaster period, but i wouldn’t have changed it for a million. He is so well worth everything.

Now we have a smiling little cutie playing with toys and he is “talking” when we talk to him, or when he does something fun. You can see it all over his face when he is happy. He makes happy noises, and really loves life:))

Renate Tønnessen
trenate@yahoo.no