Spokeshirts Blog

Edith.

Edith was born on 6th September 2007 after an easy pregnancy (so I’m told). A much wanted sister for Angus and Flora.

She collapsed at 3 days old. She stopped feeding properly, and her breathing increased to a frightening level. We called an ambulance at about 10.30pm, talking to the Emergency Services on the phone all the time we were waiting. But the ambulance didn’t turn up. The first ambulance had broken down, the second turned up an hour later, by which time Edi was completely lifeless. When the paramedic came rushing into the kitchen I slowly put her on the kitchen table. I didn’t know what else to do.

I had to drive, my wife went in the ambulance. They didn’t know the way to the hospital….

When they got into Bristol one of the ambulance drivers called a friend for advice – he just didn’t know what to do.

Expecting to be told that we were overcautious new parents, we were told that Edith had a serious heart condition, and many complications. Her lactic acid levels were at 12%. We asked a consultant how high they could go before …….. well before. He said 12% and that’s it. It took a team of four 20 minutes to get a drip into her arm. She was sedated after about an hour of panic in A&E and taken up to the Pediactric Intensive Care Unit (PICU).

My wife and I were in pieces. We worked out that you can generally tell how ill a child is by the amount of medical equipment surrounding them.

Edith 4 days old

As well as the heart problem, Edith had an enlarged liver, damaged kidneys and her gut was starting to die.

Over the next two weeks we all went through the mill. Friends, family – everyone in our village was amazing. Edith tended to do things her way, again with numerous complications including 2 seizures culminating in a bleed in her brain.

There is generally a 3 month waiting list for an MRI scan. She was scanned within 3 hours of the second seizure. The staff were just amazing – nothing too much trouble.  They even learned to cope with Vick’s daily 50 questions.

Edi was eventually strong enough for a heart operation. The surgeon visited us on a Sunday evening to sign the consent forms. Don’t sign it – she will die. Sign it – she might die. Lots of possible complications including losing her voice.

The operation went well. Because of the severity of the heart problem(s) they had to go through her chest, rather than the normal side of the ribs. She was put on heart and lung bypass, and cooled down to 19 degrees. Her heart was the size of a cherry tomato, and her chest cavity was a bit of a squash because of the amount of aorta that was removed.

At this point she had lines in her neck, her groin and her forearms and her ankles. Yes, that is one hairy baby.

A day after the op she was taken off Morphine and put onto Paracetomol. Which must have smarted a bit.

Her lungs started collapsing soon after her ventilation was reduced, and this continued every day for the next two weeks.

CPAP Ventilator

This ventilator had to be worn 24 hours a day. She was not impressed. Eventually she ripped it out herself (the tubes went down into her lungs), and her lungs remained inflated.

We took her home after a month in intensive care.

She will have to be monitored for the rest of her life, and when she gets to puberty things might get complicated. Her scar has not healed well, which may have to be rectified, but she is amazing. We owe PICU everything. I think a little trip from John O’ Groats to Land’s End is the least I can do.

Edith age one

Angus, Edith (17months), Flora.