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Noah was born in March 2012 He was diagnosed with Spina Bifida from early on in the pregnancy and as time progressed there became more complications, it became apparent that Noah was missing a back quarter of his brain, would be paralysed from the chest down, the Spina Bifida was thought to be so large that they would not be able to close the gap. There was also a chance he would have Down syndrome as we never had the test due to there being a chance of miscarriage.

As well as the above Noah also has a chance of having Edwards Syndrome “Edwards syndrome is a chromosomal abnormality characterized by the presence of an extra copy of genetic material on the 18th chromosome, either in whole or in part. The additional chromosome usually occurs before conception. The effects of the extra copy vary greatly, depending on the

noah-just-born

extent of the extra copy, genetic history, and chance. Edwards syndrome occurs in all human populations”

Trisomy 13 “Trisomy 13 occurs when each cell in the body has three copies of chromosome 13 instead of the usual two copies. Researchers are not yet certain how this extra genetic material leads to the features of the disorder, which include severely abnormal cerebral functions, a small cranium, retardation, non-functional eyes and heart defects. Trisomy 13 is fatal”

These are just a few problems that we were faced with before he was born.  To make matters worse a ‘do not resuscitate order’ was placed on Noah and we had to go through the heart-breaking motions of organising a funeral for our unborn child.

Noah was delivered by caesarean section at 6:17pm on  6th March 2012 weighing 9lb 7oz, breathing on his own.  Shortly after being born Noah had to undergo a double operation, the closing up of the whole in his back and a shunt placed in the back of his head to help drain the fluid from his brain as the pressure with the fluid on the brain that he did have could also kill him.  The operation was a success and the whole in Noah’s back was closed.

Noah went for an MRI scan which then revealed some shocking results.  Noah had a lot less brain than we thought and was actually born with just 2%  of the brain that he should have which is a small thin layer at the front of his head. This happened due to a porencephalic cyst destroying his brain.Noahs-back-after-closing

His eyes were like that of a baby born blind in the way he tried to focus to see things, this was due to the immense pressure put on his eyes, with the build-up of fluid in his head. It is actually a miracle he can see because as far as we’re concerned there is nothing visibly connecting his brain to his eyes which means there will be more tests done this year (2013)

The operation Noah had to install his shunt was not as successful. We had 5 emergency trips to the hospital, and he had developed an infection in his brain fluid called ‘enterococcus faecalis’ also, Anti biotics hadn’t worked due to Noah’s ventricles being blocked and Surgeons decided a brain wash out was needed. Noah’s shunt was removed and 2 ½ litres of replacement cfs fluid was put in his head  and a high dosage of antibiotics were given as well as daily manual draining (tapping) where up to 40 ml was taken from his fontanel every day, this had to be done as there was no drainage system in his head due to the shunt being removed, this resulted in Noah having the worst possible headache imaginable and Morphine had to be administered.

This amazing little baby has defied the doctor’s in so many ways; whenever something knocks him back he finds the ability to get through it.

After 7 weeks and Noah’s first Easter in hospital a replacement shunt was put into Noah’s head and a soft tube from the drain down his neck and into his abdomen was put in this is permanent and will always run the risk of blocking, if it does it would have to be removed again and again every time it happens. This time it was a success and healed very nicely we left the hospital on the 12th May 2012, since last may we have been to the Spina bifida clinic for kidney & bladder scans, also having a dye being put into his bladder to see if Noah needed to be catheterised the test came back positive and Noah Noah-in-hospitaldid’nt need a catheter, Noah’s eyesight has also been checked and even though there’s nothing behind looking at the MRI scan pictures there must be something as Noah has full eye sight but test are due shortly to see how much eyesight Noah actually has. Child development assessments are also done every 6 months along with hearing to be checked every so often, we have this year already been to see a bone specialist and Noah has had xrays to determine bone abnormalities which we are pleased to say Noah, doesn’t have, we have appointments every month to keep a check on his bones.

His feet turn out abit like having club foot, it takes a lot of work as 5/7 massages are done each day along with Physio, and also swimming and hydrothrerapy several times a week. Noah can’t turn himself during the night so he has to be manually turned Next on the list of treatment for noah to have is an Electroretinogram (ERG) & visual evoked potential (VEP), Noah’s eyes have to anaesthetised & a small gold electrode placed on his lower lids, Then the VEP test is to establish how well his eyes and associated nerves to the brain are functioning, whilst there Noah has another appointment for the paediatrics neurology (child development) Noah has recently been diagnosed with lymphedema and has regular quarterly treatments This amazing little son of ours has defied the doctor’s in so many ways whenever something knocks him back he finds the ability to get through it, we are so very luck to have Noah hes inspired us so much in spreading the word about folic acid & B12 even though I took it I didn’t take it early enough no one told me just how important folic acid was.

Im sure noahs story will make people think about taking it as it should be taken which is 3 months before, please click this link and it will take you to noah-big-smilethe folic acid site http://www.gofolic.co.uk/folic-facts.aspx Im now campaigning along with the spina bifida charity & folic acid team to get this information down to education we have just been told noahs story will go national and off to Parliament, I hope in my heart something is done spina bifida cases have dropped due to mummy’s having termination, what people don’t realise is that spina bifida can just effect one disc and you can lead a normal life and never know you have it ! I want to change a lot of things, I wasn’t given an information pack when miscarried I had no one to talk to other than people close to me, I miscarried in a room which my baby was called a ‘product’ I wasn’t told about being able to have a funeral from 12weeks gestation, and I could hear other babies being born, things need to change & information needs to get down to girls from the age of 16 planning pregnancy’s I found out at 40 just 24years to late !!

 

Please share my sons website and pass on this vital information on.

x Love Shellybobbins® xxx

 

Comments   

0 #11 Ian S 2014-09-17 23:17
Just watched your episode of DIY SOS and was taken on an emotional roller coaster. You're an amazing family and doing great work raising three kids.
Watching the show brought back lots of memories of my childhood, seeing my mum bring up my disabled sister and us three lads. We were told my sister may not survive but she will be 40 next February!
I'm now a father with a 2.5 year old and 7 weeks old daughters - both of which had big hugs from a crying Dad after the show.
Thanks for letting us see into your lives for a short time.
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+1 #10 Kelli 2014-09-15 19:00
Finally got to watch your programme and I cried all the way through it. You and your family are wonderful, inspirational people and deserved it so much.
Love following Noah on facebook and see how he grows, he is such a funny and gorgeous boy. Your doing a fantastic job.
Xxxxxx
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+2 #9 Sarah Hackett 2014-09-02 05:17
Wow! You and your family are amazing! It was heart wrenching watching you on the show and seeing you beating yourself up for something that could have happened to any of us. Try to think of yourself as being so special (your daughters and husband included) that you were picked to have such a rare gift of a son. You are obviously a fantastic Mum; your girls are a credit to you, your husband clearly worships you and your beautiful boy is flourishing. Keep inspiring people and enjoy living in the home you so clearly deserve.
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+3 #8 David Snook 2014-09-01 20:01
Well done Michelle. A really moving programme. so emotional to watch. You were so brave.

Keep your chin up. Stay positive. You are a wonderful mum to Noah.

Take each day as it comes, and keep smiling through.

Best wishes

David

xxxx
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+2 #7 Amanda Haslop 2014-09-01 15:16
Noah is a little miracle. I love to see how he's developing , such a happy little man. DIY SOS had me in tears. Well done Noah, you have such a lovely family xx
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+3 #6 Samantha Dean 2014-08-28 22:43
Noah is one inspiring little boy he is so unique everyone should know this little boy !!!
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+5 #5 Samantha Oneill 2014-08-28 20:58
You are a truly amazing family. The love you all have for Noah is wonderful. He is an amazing boy and I wish you all the very best. My ice bucket donation went to you guys because DIY SOS was the start of your happier lives but you will need more support. Come on everyone and help Noah. An amazing miracle boy. Love and best wishes to you all. Xxx
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+4 #4 Sally 2014-08-28 20:57
I have just seen your amazing son ❤️❤️❤️
You are a very special mum, your dear little boy wouldn't be anywhere without your love and devotion. You are a star mum.
My daughter also has a lot of problems with my grand son he has half a brain, was born 11.11.2011 seizures strokes meningitis eventually GOSH helped him and separated the two parts of his brain. Since then seizures have stopped and my daughter is weaning him off drugs fingers crossed the seizures don't come back.
He has just started to sit unaided, the right side of his body can't function due to his left side of his brain being damaged. But like your lovely boy my grandson is making progress, we don't know if he will ever walk speak etc but we believe in him and hope he will. Like you my daughter is wonderful with him (she is on her own) marriage broke down, life is very hard for her. I'm delighted for you and your family
Kisses and cuddles to you all
Sally xx
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+5 #3 Deborah 2014-08-28 20:44
truly inspirational
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+4 #2 Helen pool 2014-08-28 20:41
Just shared this page on my FB page - I go to a tea/coffee morning fortnightly and I'm going to see if some of our old folk will knit some premature baby hats for you.
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