About Noah

 

Baby Noah 1

 

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”

And 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 just born

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's back after closing

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.

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.

Noah in hospital

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 did’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 the 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 !!

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

x Love Shellybobbins® xxx

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15 comments to About Noah

  • Linsey Morgans  says:

    Been shouting it from the roof tops Noah, your charity is amazing just as you & your family are… big hugs.x

  • Leila  says:

    Little Noah spirit is filled with determination, courage and is contagious. Much love. Leila.

  • G;LENN RAY RHODES  says:

    YOU WILL HAVE ALL THE SUPPORT I CAN GIVE TO YOU AND NOAH SHELLY.

    • shellybobbins  says:

      Bless thats really kind of you thank you so very much

      love shelly xxxx

  • Sally M Pacholok  says:

    In our book Could It Be B12? An Epidemic of Misdiagnoses, we discuss the underdiagnosis and misdiagnosis of vitamin B12 deficiency pre-conception, during pregnancy and during breast feeding. We have devoted 2 chapters to this problem and how B12 deficiency causes BABI (B12 deficiency Acquired Brain Injury). The problem is the medical community is up to date on folic acid, but completely ignores the B12 component, which is vital to fetal development, health, and life. In any event, would like to join efforts in spreading this needed piece of education to the world. Would be willing to speak to Parliament to educate them. Please visit http://www.B12Awareness.org.

  • trevor mathews  says:

    Hi Shelley

    I sent you an email a few weeks back…My company makes fibre optic lighting displays that would be great above a bed etc…this is relaxing and would be very therapeutic, and would if you accept donate one to Noah. Please get back if this would be of interest.
    Trevor trevm2000@gmail.com

    • shellybobbins  says:

      Hiya Trevor

      HUGE thank you!!! sorry ive just seen this & ive emailed you back with my number please get intouch and thank you for yor kindness

      love shelly xx

  • Rondey Routledge  says:

    I had the pleasure of meeting the inspirational little boy in asda a couple of weeks ago he is marvellous and had a brilliant and dedicated mum , hope you enjoyed your sweets I bought you Noah love to you both

    • shellybobbins  says:

      It was SO lovely to meet you, your daughter and grandaughter & very kind of you to give noah lovely chocolates too as soon as we got back I told hubby & girls too then sat noah on my knee and hes ate two of the chocolates !! Mmmmmm he said chomping away xxxx keep intouch it would be so lovely to see you at noahs first charity ball at armathwaite hall on the 24th May 017687 88900 this is the number for tickets take care and thank you for your support, gift for noah really kind of you love shelly xxxx

  • Rod Allen  says:

    Hi,what a great day i had the pleasure of hugging Noah today what a fantastic little boy lots of love Rod the fireman xx

    • shellybobbins  says:

      Hello Rod

      So lovely of you to hold noah and take him in the fire engine, I got some wonderful first pictures that will be kept for ever & special memories to show noah when he gets bigger, thanks for making it special, remember the gala dinner at armathwaite hall on the 24th May 017687 88900 tickets are still available and it would be lovely of you to see noah again but also meet noahs sisters and daddy too take care & thank you

      love shelly xxx

  • Adele Haywood  says:

    Amazing story. Guys check out The Butterfly Wish network too! Xx

  • Charlotte  says:

    I am following you guys on facebook and his pictures melt my heart daily! I can relate to alot of the things you go through because my son also has SB, hydro, clubfoot just to name a few and I find your family so inspirational! If Im having a miserable day, his little face cheers me right up. Lots of love little man, keep going!! xxx

  • John  says:

    I had the pleasure of meeting Noah at our first SBS meeting. I feel humbled to have met such a miracle child and his mother. We love you Noah!

  • Angela Fitzsimons  says:

    I met this amazing little man tonight and he is a credit to his parents and sisters he is such a gorgeous happy little boy and he really enjoyed tonights performance by the Razzamataz guys tonight. His story is so inspirational and to still be smiling after all he has been through is a miracle. Keep up the great work and thank you so much for taking time out to tell me his story you really made my night and made me feel guilty for worrying about my op when your son has amazed everyone and im sure will continue to do so. I will now follow his story xx Angela

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