Clarke, Nathan Theo

[left:7dd271f9a0]http://www.cherubs-cdh.org/Album/new/Clarke-Nathan.jpg[/left:7dd271f9a0]Nathan was diagnosed at 21 weeks in utero with a L-CDH. That was a day to remember, all these words the doctor was saying, what did it all mean? After that we had so many tests and scans for the rest of my pregnancy. They told us our baby had less than 50% chance of survival.

I just wasn't prepared for it. I remember it like yesterday right on my 40 week check up they told me his heart beat was strong that was it, I cracked after all this time. I remember saying “Then why is my baby going to die?” That was it. The doctor wouldn't let me go home. They took me up stairs to bring him into this world.

It was the longest 2 hours of my life because here I was fighting not to give birth to him, maybe I thought if he stays inside me he is safe. I remember there was me, my husband and a nurse then bang the room was full of doctors and others. I didn't even see or hear him cry. The doctor brought a photo of him into us to show what he looked like.

When we got to see him there where so many tubes and he was paralyzed so he didn't move. I remember my father saying he looks like a remote control doll and with that he left the room. I think I must have spent nearly all night in with him just looking at him. Here he was normal size yet fighting for his life.

Exactly 24 hours later they came and told us he was stable so they would operate. We waited and waited then someone asked us too follow them, we both thought that was it, something had happened. But when we got over to the children's hospital a doctor explained what they did and how they did it. Nathan's stomach and intestines where up in his chest cavity, his heart was pushed to the right and his lungs were very small and squashed.

Nathan has had 2 repairs now and has been in and out of hospital with gut and bowel obstructions for 11 years. Nathan has asthma and a small hearing problem. Late last year he was diagnosed with Asperges syndrome and now with coeliacs disease. We are now waiting for a bowel bi-opsy to see if there is any damage to the bowels. Nathan has had speech therapy, occupational therapist and physiotherapy. Nathan also has scoliosis. He even went bold at one stage! Nathan has had teeth problems in the past too.

Nathan was born a fighter and still is, he does not get a temperature like every one else he goes cold and clammy. Nathan has a very high tolerance to pain its like he doesn't feel it. Nathan is very good with maths and science but his writing just doesn't connect, a small motor problem.

Nathan is a very special little boy he looks like other boys his age but he's not.

Nathan you are the reason I get out of bed everyday, you give me heartache and joy but you are my miracle boy and I love you very much.



Written by Nathan’s mum, Monique Clarke (Australia)
2003