Just for JESSICA Round 2!

Product Description

Chelmsford, England, United Kingdom

Supporters

Summary of our previous Chuffed campaign from 2016 whereby we raised £1421-

On the first week of June 2016, Jessica’s Dad Dan, Alan Wheeler, Jo Wheeler, John Hall and a small group others cycled from Lands End to London, travelling the best part of 400 miles in 3 days to raise money for Jessica. Please read her story so far below and the struggle is not over yet.

In a effort to help raise more funds, myself, Jessica’s dad and some other close friends will also be among a group competing in Spartan Beast, a 13 mile race coupled with over 25 obstacles to help raise money to reach our target.This is taking place on Sunday 2nd of October, a week after Jessica’s 1st Birthday! The money we raise will go towards Jessica’s treatment which will need to be part funded and the travelling expenses that Dan and Luci will incur taking her to the Great Ormond Street hospital where she will receive the best care in the world

Her story is a touching one…… Told by Dan,

Jessica Rose Baker

Born on the 22 September 2015 at 29 + 1 week’s gestation, 11 weeks early weighing 2 lb 10, she was due 7 December 2015.

This journey started on Sunday 20th September when Luci experienced some bleeding. We attended Ipswich Hospital thinking she was going to get checked out and we would be going home the same day! It turned out that Luci was having a silent labour and was mid way through dilation, but having no pain (this is very rare and even confused the doctors). With the help of medication to slow down labour Luci managed to hold on for three days so life changing drugs could be administered and have affect to help the function of Jessica’s lungs.

Luci was examined again three days later and was now 7cm dilated, her waters were bulging and Jessica was doing the River Dance on them. It went a bit manic as the situation turned into an emergency C section procedure for two reasons; Jessica was breech with her feet down, and due to how early she was. It took only 20 minutes to get Luci to theatre, open and the baby out! During the procedure I was witness to it all. The room was filled with 15 -20 different doctors and a portable incubator with ventilation equipment which was prepared and ready for use. At this stage it was unknown what condition Jessica would be in or what help she would need to survive.

Once out, Jessica was straight into the incubator where doctors worked on her to get her stable for transportation. She resisted ventilation and was placed onto a CPAP machine which creates pressure in the lungs so the air sacks are open to their maximum capacity to get the most oxygen in possible.

Luci never got to see Jessica and was left behind while I followed Jessica to the neonatal ward. A kind doctor took a photo of Jessica and showed Luci. I was soon kicked out of the neonatal ward as the doctors needed space to hook her up to monitors and put in lines.

It took 18 hours until Luci was able to see Jessica for the first time, which to her felt like forever. We were presented with a tiny helpless little baby with an intense amount of wires, tubes and probes littered all over her body. We had to wait 4 days until we could have our first hold.

We spent 9 weeks on the neonatal unit with too many highs and lows to mention.

It was clear throughout, that the care provided by Ipswich Neonatal team was absolutely fantastic and it is hard to find words to thank them for all their kindness and support.

On returning home Jessica still had a nasal gastric tube (tube feeding) as she was still too small to be able to fully feed. She was seen regularly by the Neonatal outreach team and it took a further three weeks until the tube was removed and we were on our own.

Due to Jessica’s prematurity and needing oxygen at 36 weeks gestation she qualified for the RSV jabs. This course of injections over the course of 5 months prevents against lung infections throughout the winter as getting bronchitis etc, could see her back in hospital on a ventilator.

Throughout Jessica’s stay in hospital it was recorded that she had very prominent eyes but doctors didn’t think much about it as this is normal for premature babies. We were told she would just grow into them. At her RSV appointment in December 2015 we collared a paediatric consultant to check her eyes again who then referred her to the ophthalmologist to investigate. She was seen in mid December, at this point life seemed to be on the up as Jessica was finally fully breast feeding and had got into a good routine and prematurity seemed a distant memory.

Then our world came crashing down on Christmas eve when the eye consultant had written to us stating he believed Jessica’s prominent eyes were due to craniosynostosis Crouzon syndrome, which is totally unrelated to being born prematurely. Obviously not knowing what Crouzon Syndrome was, Mr google informed us and Christmas became a very tough time.

Crouzon syndrome is the most common type of complex Craniosynostosis.

The skull is made up of several ‘plates’ of bone which, when we are born, are not tightly joined together. The seams where the plates join are called ‘sutures’. As we grow older, the sutures gradually fuse (stick) together, usually after all head growth has finished. When a child has craniosynostosis, the sutures fuse before birth. It can affect one suture or several.

When more than one suture is affected, it is called ‘complex craniosynostosis’. This may happen as part of a syndrome (collection of symptoms often seen together), and so may be referred to as syndromic’ as well. In Crouzon syndrome, both coronal sutures fuse before birth and other sutures may be affected too, making the skull misshapen. The bones in the midface are also affected, as the cheekbones and upper jaw do not grow in proportion to the rest of the skull. The bones around the eyes (orbits) are wider spaced and shallower than usual, causing the eyes to bulge outwards. Children born with Crouzon Syndrome, often require several surgeries in childhood ; to open the fused sutures, to open the nasal airway, to move the jaw and midface and many more, sometimes all the way until the early twenties.

After a very long week, we managed to get an appointment for head x-rays to see if the plates had fused. We received the results a week or so later which showed the sutures to still be open. We were then referred to Great Ormond Street Hospital and were hoping her prominent eyes were a singular issue and not due to Crouzon Syndrome.

Having seen the specialist, our world came crashing down again as he felt it was likely Jessica has Crouzon syndrome. It became apparent that the sutures do not need to fuse before birth, this can also occur during infancy, he explained that her sutures are likely to fuse before her head is fully developed. We are awaiting genetic tests which may assist in confirming the diagnosis. The hardest part is that we have to wait to see how this condition develops but it is likely Jessica may have to have several operations throughout her childhood.

We have already learnt that our Jessica is a true fighter and has defied the odds with how well she has done for a baby born so early. We love her dearly and are enjoying being new parents. Jessica is doing very well gifting us with her big smiles and her placid and happy nature. She is developing beyond her corrected age.

We have had such great support from family, friends and work colleagues along the way who have brightened up our darkest days. Without you all, life would have been harder.

We don’t know what the future holds, but we know we love each other and will remain strong as a family to face everything we need to.

Julie Hall

4 years ago

£50

Michelle Brown

4 years ago

£20

Sam Eastoe

4 years ago

£25

Jo Eastoe

4 years ago

£50

Yvette Shepherd

4 years ago

£10

Jodrian Kat

4 years ago

£150

Justin Bick

4 years ago

$100

Leanne Dmore

4 years ago

£20

Alan Wheeler

4 years ago

£25

Linda Gowers

4 years ago

£25

Jane Kennedy

4 years ago

$50

Sarah and Barry Flitton

4 years ago

£20

Jo Eales

4 years ago

£20

Charlotte Ovel

4 years ago

£20

Kim Belham

4 years ago

£20

Lucy Watson

4 years ago

£20

Anonymous

4 years ago

£50

Sara Hall

Adrian and Jo Kat

John Hall