Heidi’s Story

Heidi was born at 42 weeks weighing a whopping 9lbs 2oz and 60cms long. She also has bilateral club foot and she underwent extensive surgery when she was four years old.

story-heidi

She unfortunately has to wear callipers.  In 2013 she was further diagnosed with significant scoliosis.  After a difficult birth, she was pretty ropey and on feeding she started to vomit.  The midwife was not at all interested even though her vomit was definitely not normal and she did not open her bowels within the first three days.

We were discharged the next day with our yellow, vomiting and very unhappy baby!  All I can remember is her crying and crying.  She never slept, was rarely still and we all quickly noticed she wasn’t putting on weight or getting taller.

By 8 months Chelsea & Westminster Hospital had taken over her care and I stopped breast feeding and she was started on Neocate which she loved.  She continued to struggle to put on weight or open her bowels and over time more laxatives were added in to help open her bowels.  She was also diagnosed with severe reflux – refluxing over 80% of the time and was put on medication for this.  As we started to wean her, it was obvious her body could not cope with meat, fish, milk, egg, soya or wheat.  As a result she was placed on a limited diet and most of her calories came from her Neocate milk feed.  She is anaphylaxis to fish, eggs and wasps.

Every year Heidi’s bowels and reflux has become more difficult to manage and it was becoming increasingly difficult to get enough fluid into her due to her vomiting.  Her early years were spent in and out of hospital, endless days at home because she was too sick to take out and together with numerous urinary tract and ear infections.  At two years old she had her first set of grommets (now 8 sets) and her tonsils and adenoids taken out to help her cope with her reflux and slow down her ear infections.   When she started her menstruation, her bowel moved up a gear and after numerous tests, it was confirmed that the transit in her bowel was painfully slow and she struggled to empty her bowel.  The knock on effect being her small bowel was under pressure and she was finding it difficult to eat and hold food down.

In January 2013 Heidi became very unwell and had to be put on Intravenous Fluids for four weeks while her bowel recovered from severe faecal impact and a nasal gastric tube was put down to enable her to receive large amounts of laxatives, extra fluid and neocate when she cannot eat.  She remains on a very restricted diet and regularly has periods when she cannot eat or drink, but thanks to the tube we can keep her at home.  She had her nasal gastric tube converted to a peg tube and receives all her medication and fluid over 14-20 hours a day depending on how her reflux is.  The pain continues, her sleep is disturbed and she is now struggling to breathe properly due to the pressure in her bowel and increasing reflux.

Her bladder is baggy and big and she soils and wets through no fault of her own,  2014 has been a year of watching Heidi deteriorate and struggle more to cope with her symptoms.  She is on the Autistic Spectrum and has ADHD for which she is medicated.  She misses school regularly and is often exhausted and in pain although her ADHD never lets her rest which is really difficult for her.  Chelsea & Westminster are supporting us greatly and we are looking other procedures and medication to help Heidi and control her symptoms together with keeping the small bowel healthy so she can continue to eat and stop the reflux from becoming life-threatening.  Throughout all this Heidi remains Heidi, always smiling, never complaining and always more worried about her brother Albert.

After years of being admitted onto the ‘small person’s ward – 0-11 years- it is overwhelming to watch what these teens go through when they have bowel conditions.  Bowels are tricky, unpredictable and take ages to get under control, their teen years are very different to their friends and they quickly lose their position in their own social circle.  Having watched the teenagers, I am even more determined to help other teens cope with their bowel conditions and feel part of a network, their schools and communities.

The lack of communication, particularly with Heidi, makes it very easy to miss things resulting in her getting very sick and she never complains and when things get too much she will turn off her machine without letting us know which always has a dramatic knock on effect.

Heidi enjoys the routine of school and is particularly keen on Hospital School where she has made a small group of friends which is comforting to Michael and I.  We know she worries a little that she may end up like Albert, but we are hoping with the advancement in the world of bowels, she will avoid this and will be able to continue to eat the foods she can cope with and continue to stay at home with us for as much as possible.  Heidi is a mean surfer and loves anything to do with water and SIMMS!

Thank you for reading Heidi’s story.

The Bells

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