Tuesday, 20 May 2014

More information about CDH UK

The fundraising event for CDH UK which I played at on Saturday was organised by Megan Chapman. I asked Megan for some information to post about the charity and the CDH and she very kindly sent me her story; 

My husband and I went to our 20 week anomaly scan hugely excited to be finding out the sex of our baby in November 2012. We never dreamed anything could be wrong as the pregnancy was going well and the previous scan was normal. Everything seemed to be going along normally until the sonographer asked me to leave the room and jump about as the baby was in a difficult position. I thought this a little strange and when I returned there was another member of staff in the room. 

They explained they had seen something concerning, but as the first sonographer had only been doing the job for a year she wanted a second opinion. That's when we started to worry and the smiles disappeared. It went very quiet and the senior member of staff said quietly that she was very sorry but our babies heart was on the wrong side of their body, which indicated it was likely they had something called Congenital Diaphragmatic Hernia. Unfortunately it was late in the day and they couldn't refer us to the specialists to confirm a diagnosis until the next morning. We had to go home with our worlds turned upside down not knowing what happened. 

The next day the diagnosis of CDH was confirmed by a specialist. They explained that our baby (a girl) had a large hole on the left side of her diaphragm meaning her abdominal organs were in her chest cavity preventing her lungs from developing. She had just a 50% chance of survival post birth. We were offered a termination which we declined and I had an amniocentesis test to check for other abnormalities, which came back clear.

We were devastated, and felt completely lost. On returning home I searched the internet and immediately found CDH UK who I got in touch with. They sent us a parent support pack with all the information we needed on CDH and a few special extra touches like a baby blanket, mittens, hats and a hand knitted teddy bear.
We were also added to an online support group for expectant parents, which was a real lifeline. We got to speak with others in our situation and they helped us through the minefield of medical jargon and answered questions we often forgot to ask at the hospital.

I was scanned every three weeks through the rest of my pregnancy, luckily things stayed the same and she didn't deteriorate. However we were warned that until she arrived they wouldn't know how she would get on.

Then sadly at 34 weeks pregnant my dad passed away suddenly. Getting through those last few weeks was the most difficult time but we had to stay strong for our little girl.

At 37 weeks I went into labour and on the 21st of March 2013, Jessica Rose came into the world. She was immediately taken away and intubated and sedated. We didn't see her for 6 hours until all tests had been completely. Her surgeon came to see us and told us he was cautiously optimistic and that they would proceed with surgery to correct the hole the following day.

Her surgery went well and she was fitted with a Gortex patch as the whole of the left hand side of her diaphragm was missing. Most of her abdominal organs had entered her chest, but these we're returned to their normal place. Her left lung was a quarter of the size it should of been.

She stayed intubated on ICU for ten days until being weaned off the ventilator and we finally had a chance to hold our brave little girl. Ten days later she finally came home after establishing feeding.

Since coming home Jess has gone from strength to strength and is a lively toddler now. Other than her large scar you would never know her life had been in the balance.

CDH UK continue to support us and I am now the Family Liaison Volunteer for Oxfordshire.

We continue to raise awareness and funds for CDH UK as we can never thank them enough for their support. Sadly too many babies are dying from this condition. It affects 1 in 2500 babies and is as common as Cystic Fibrosis but hardly anyone had heard of it, we certainly never had.

If you would like to help us to continue to support other families with the expenses of regular hospital visits, accommodation for parents if their little ones are in hospital for long periods, funeral costs and towards an extremely important research fund to look into the best treatment pathways for these special babies then I have set up an online fundraising page www.mycharitypage.com/megchap/ your support would be greatly appreciated

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