Noor’s Story

Beautiful little Noor seemed a perfectly healthy baby when she was born on 29th August, 2013. On the day after her birth, she was checked by the midwife and doctor and was declared ready to go home in every way, except she had not yet had any bowel movement.

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Her parents, Sam and Jamar, were told they could take their little girl home to her sister Shireen, who is now 18 months old and her big brother Sami, who is 10, as soon as she had filled her nappy.

While they were waiting for this to happen, Sam noticed that Noor was reluctant to breast feed and, although she looked healthy, she didn’t seem right. Then, all of a sudden, Noor was violently sick with bright green fluid. Sam had never seen green vomit before so didn’t think much of it and was frightened and confused by the sudden activity surrounding her little newborn.

A surgeon was called and Noor was taken away from the antenatal ward and taken to Neonatal Intensive Care (NICU) where she was put on a drip and taken for X-Rays and investigations. Noor had a malrotation in her bowel, meaning her bowel had become twisted in the womb and was blocked. On September 2nd,  Noor was rushed to the operating theatre to fix the problem. When she returned, Noor was placed on TPN to enable her to receive nutrition into her blood stream while her bowel recovered from the surgery. However, she remained reluctant to feed and continued to vomit and was taken for a second operation to explore and fix further blockages a month later.

In the weeks and months that followed, Noor was slowly introduced to a special, easy to digest, baby formula given through a nasal-jejunal tube, a tube running through her nose, through the stomach and into the bowel below. In November, she graduated from the neonatal unit at Chelsea and Westminster Hospital to the specialist gastroenterology unit. She eventually managed to wean off TPN and was home just in time to spend a wonderful Christmas with her family. However, Noor was struggling to gain weight and began being sick again. In January, she was re-admitted to the gastroenterology unit and, once again, had endless x-rays, endoscopies and investigations.

On 27th January, Noor had another operation to remove four blockages in her bowel and was put back on TPN. She has not been home since. Sam has to juggle living in hospital with Noor and looking after her 18 month old sister and 10 year old brother. Sam say’s; “It’s a disaster! I have no life. I’m trying my best for everyone but I can’t be mum for all my children at the same time. When Sami or Shireen are sick or need me I can’t be there. It’s heartbreaking!”

In March, the family were told Noor has a condition called ‘pseudo-obstruction’ meaning her bowel will always behave as if it is obstructed and will not absorb food properly. She will remain TPN dependent and will one day need a small bowel transplant.  Sam and Jamar are learning how to give Noor the medications she needs, to relive her bladder by catheter and to do daily bowel flushes and  will soon learn how to administer TPN so they can take their baby home.

This was written in January 2015 and will be updated soon – for ongoing news please check our Twitter feeds or Facebook page.