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BBC World Service Interview with
Shelly & Rob
The Channel 5 "Extraordinary People" All Episodes

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This is "Noah's Story"



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


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.org.uk/  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



0 #33 Jill perrin 2017-03-18 19:15
What an absolute inspiration. I am sat crying watching his gorgeous face on DIY SOS. God bless you all. He is a little miracle and i wish you all the best days of your life with him. He is gorgeous.
0 #32 Susan binks 2017-02-15 00:16
What a delightful cheery little boy so brave and always smiling when I'm in pain noah I will think of you and my pain will be gone I'm sure I hope you do walk soon you deserve too x
0 #31 Lynn Carr 2017-02-09 22:39
Inspired not only by Noahs bravery but his parents tenacity. My heart melted as he has faced many challenges and always with a smile on his face, it puts us mere mortals to shame. What an extraordinary sweet little boy. I'm sending all my love and hope all your dreams come true.
0 #30 Chris 2017-02-09 22:38
Noah and his amazing family have been in my thoughts all day. I have been telling my friends, family and work colleagues about a wonderful little chap who smiles and laughs almost constantly and took all the medical treatment and procedures with such trust and courage. The love and care he is shown by his family shines through him like a beacon. He is just a child yet seems to know whats appropriate and is so well mannered and polite. You are all so lucky to have each other. I don't think this is the last we will hear of Noah, I have a feeling he will go on to greater things
My Sister was born with SB and is now 63.
She had several operations as a child and has trouble walking barefoot but other than that she has no problems and no one would know that she had SB.
I hope things continue to improve for Noah, he seems a very special little boy with a family to match.
0 #29 Sue bland 2016-11-23 20:04
What can I say little Noah is a inspertion..I've got a grandson due in March and he's got sb we were devastated at first but reading and seeing Noah has give me hope..he's such a cutie much love xxxxx
+1 #28 Sammy 2016-10-17 20:07
Amazing :)
+2 #27 Sammy 2016-10-17 19:45
Hi my name is samira. I just watched the documentry of your beautiful little boy Noah, and i just had to find a way to leave you a message. I think he is amazing and one of a kind, he is such a brave boy and he is blessed with such amazing parents. I am a child nurse and i work with poorly babies, we see a lot of serious cases, where babies are so poorly. Seeing your boy thrive and develop so well really gives neuroscience hope! I wish i could meet Noah he is inspirational!
+2 #26 Jenny 2016-10-16 18:47
I watched your amazing son Noah on channel 5 on Tuesday what an amazing boy and family you all are. I also have a son age 7 who has fluid on the brain and some of the word the doctors said to you before Noah was born was also said to me. Just wanted to say your program hit my harts do what a fantastic family you are. I wish all of you all the luck in the world big hugs to you all xxxx
+2 #25 Nic 2016-10-12 22:34
I've just watched the channel 5 documentary and I'm blown away both by Noahs' incredible journey, but also by the way Rob and Shelley have created such a unique routine to keep his development consistantly ahead of the curve. You are an inspirational family and it was a joy to see how much you have achieved and I hope that Noah will continue to confound the medical 'experts' by pushing the boundaries further as he grows older. I suspect that there are many more milestones yet to be experienced that conventional medicine will be unable to explain, but Noah goes to prove that where there is a strong will and an undying hope, nothing is impossible. Keep smiling :-)
+1 #24 Mohamad 2016-10-11 22:00
Inspirational what can amazing young boy

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