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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 whatever we need to.

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