We’ve decided that instead of funeral flowers etc we’d much rather people donate to the amazing Great Ormond Street Hospital Charity we’ll also be doing some other charity events throughout the year to raise as much as possible.
Here’s our little story of what our warrior princess had to go through in her short time earth side...
After a check up scan for reduced movements at 38 weeks the scan picked up fluid on Penelopes brain. To be on the safe side Broomfield sent us to UCLH for further scanning as the amount was abnormal. There our worst nightmares came true, Penelope was diagnosed with a super rare condition known as Vein of Galen Malformation. So rare, it’s only a one in a million chance that a baby can develop it, usually between 6-11 weeks gestation.
After the diagnosis we stayed in London for a week to have constant monitoring and I was booked in for a C-section on Monday 15th, as a natural labour wouldn’t be safe for her. Little miss Penny had others ideas and my waters broke early hours of Mother’s Day on the 14th and she safely arrived via c-section.
She was doing so well and we were hopeful that no intervention was going to be needed. We finally felt hopeful our little girl was going to be ok. Then, Tuesday 16th we got the dreaded news that her vitals weren’t doing well, she couldn’t keep her milk down (due to not enough blood getting to the stomach it started reacting) and they were going to have to operate the following morning to stop the malformation from getting out of control. Wednesday 16th March, having to watch them sedate and take our little 3 day old baby away from us - was shattering. 5 long hours later we were called into the meeting room on the ward, the surgeons had successfully managed to minimise the flow to the malformation but, in doing so it had caused haemorrhaging on the brain. It was like someone had completely knocked the wind out of us.We knew best case we would have a heavily disabled daughter but then the doubt of ‘is she going to get through this’ started dawning on us.
Later that night Penelopes levels were stable, she was doing well and then a blockage in her breathing tube caused her to go into cardiac arrest, she lost her heartbeat for 19 minutes until a nurse was able to get it back. Mums instinct told me, she was gone. There was no comingback from this. After watching her monitors for hours and hours praying that some miracle would save our baby we were given the soul destroying news that there was going to be no recovery. Penelope couldn’t support herself anymore, the machines and medication were keeping her with us, but her body was unresponsive now which told us her brain was too heavily damaged.
On Friday 19th March our beautiful little warrior passed away peacefully, in her mummy’s arms with her daddy cuddling us both. I don’t think anything could prepare parents for a moment like that. It almost felt inhumane. We knew we wanted to do something for GOSH after allthey had done for us, even in them short days. They put us up in accommodation that was close to the hospital and the support we got was what got us through. So, we’d like to try and give a little back somehow!
We never thought we’d need the services of GOSH, you always hear it happen to someone else... but unfortunately we were them people you hear about that needed their help and boy did they do all they could. Any donation would be so greatly appreciated and we’ve seen first hand what a difference it can make. Thank you❤️❤️
- Sarah Connolly
- Elizabeth Mitchell
- Kirstie&Ben Lewis
- FERHAN IBRAHIM
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