Our Race Against Time

Our littlest man turned 2 last week.  Amongst all the celebrations, gifts, cuddles and cake, there’s an uneasy feeling which I can’t shake.   I felt the same last year, and I suppose it may happen again next year, but I’m hoping that the feeling will fade as more time passes.

The fact is, this picture was taken when T had just hours left to live.  That’s not the exaggeration of a hysterical mother; it’s a fact.  Thanks to our NHS, he just turned 2, and has a normal life expectancy with a few remaining health issues.  But due to a lack of education or support for breastfeeding, and a whole host of medical staff sending me away insisting there was nothing physically wrong with my son, he reached a stage where he was hours from death.
After I insisted he be seen that very day, a paediatrician examined T, listened to my concerns, patronisingly reassured me that my descriptions of his symptoms were essentially my own paranoia, and tried to discharge us with a prescription for Gaviscon.  His condition had been intermittent until this day, but we now know that the situation he was in was irreversible without emergency surgery.

To cut a long story short, I had to fight really hard for anyone to believe there was a medical problem with T rather than a milk supply issue.  He was born with intestinal malrotation, a birth defect which causes the digestive system to form in a strange position, leaving it predisposed to a fatal volvulus.  This means his whole gut twisted around itself, cutting off its own blood supply.  

Until this day, the twists and blockages had been temporary (although dangerous enough on each occasion) but this day was different  Within hours his bowels would have died, and shortly afterwards his organs would have shut down.   He simply wouldn’t have woken up the next morning. 

Once I refused to leave and force-fed T (knowing what would follow), I walked into the middle of the ward and when his symptoms were present in front of a roomful of senior doctors, it was suddenly panic stations.  We were admitted, lines were in, and we were transferred by ambulance in the middle of the night to a children’s hospital for hurried testing and emergency surgery.  We are beyond grateful for the excellent care received once he was diagnosed. 

I love looking back at Facebook pictures ‘on this day’, but not this week.  I feel terrified looking back at pictures from days when Toby had what I now know are emergency symptoms.  NICE guidelines, as well as our own local hospital’s training, states bilious vomiting in an infant must be treated as though it’s volvulus until proven otherwise.  It makes me furious that medical staff failed to follow this procedure countless times, but more than that – it horrifies me that I didn’t know the signs myself.  When I see a picture of T aged 5 days, it’s like watching back a drama of our lives and panicking that he won’t wake the next morning; wanting to grab myself when I showed the visiting midwife the colour of his ‘possetting’, described his symptoms, and was told he’d be fine.  I want to shout, “Your instincts are right!  Don’t let her calm your fears!”  When I see his picture aged 10 days, I’ll recall the visit to the hospital when the paediatrician said she’d “allow” me to continue feeding T myself if I could prove I had a supply, despite the fact I’d already had the humiliation of putting on a ‘feeding display’ for two other members of medical staff.    I’ll remember defiantly pumping 8 more ounces of milk after a feed, desperately demonstrating that this wasn’t the issue.  I’ll recall my exasperation as I asked, “But if he’s not getting any milk, what is he throwing up every couple of hours?!”  I’ll want to jump back into that room and insist that we get transferred immediately to the children’s hospital. 

I can’t enjoy the memories from the 2 weeks we were dangerously close to losing our son without even knowing it.  It’s silly, as it’s not a drama I’m watching.  I know there’s a happy ending, and there’s no need to feel nervous looking back.  I’m sure we all imagine worst case scenarios whenever our child has had a lucky escape from any situation.  

T’s life was saved, and we made a lasting difference.  I didn’t want to just vent on Facebook or to close family and friends.  I followed our hospital’s complaints procedure, chased it up and training was revised as a result.  This may save a life, or it could mean a few tests which show the good news that another child is in the clear, but at least I wouldn’t have a future family’s distress on my conscience as I’ve tried to prevent this situation reoccurring in our paediatric department.

I hope that I can enjoy our newborn baby photos at some point, but for now they seem bittersweet.  I can absolutely enjoy spending time with, and looking at pictures of, our nutty little 2 year old, though!

Copied from NICE, for awareness purposes:

Bilious vomiting is the key presenting symptom. A child presenting with green or yellow vomiting should be presumed to have volvulus until proved otherwise. Infants presenting in the first 24 hours after birth through the first week of life tend to have more severe obstruction and present with bilious vomiting and feeding intolerance. After the age of 2 months, bilious and non-bilious vomiting occur with equal frequency. Other symptoms may include failure to thrive, anorexia, constipation, bloody stools and intermittent apnoea. (Knott/Tidy, last reviewed 2015)

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8 thoughts on “Our Race Against Time

  1. My heart goes out to you, it must have been terrifying. I am so glad you trusted your feelings and stood up for and spoke out for your baby. ❤ xx

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  2. You will never ever forget what happened Abby, but as time passes it will fade a little. You have done your best to raise awareness for others in the future. You have the most beautiful, lovely, crazy little boys T and H. That is a lovely picture of you and T on his 2nd birthday. Look forward to the future and the many happy, funny, crazy and sometimes sad moments that you will have over the years. The years go by so quickly, enjoy every moment. The boys are very lucky to have such wonderful parents. Lots of love and hugs to you all.

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  3. I went through something very similar and my son was finally diagnosed and in theater because of malrotation and a valulus at 3 weeks old. He is now 12 and has some ongoing difficulties but i now look at that time and see how far we have come and how much we can fight and make a difference. Lessons were learned from my son and the hospital changed how they treat symptoms in children to prevent a miss diagnosis again. My son wears his scars proudly and I look back at that time as difficult but also a time that i learned about my son and our family. time eases the pain. time is a great healer

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  4. Lots of love from a fellow malro mama. Good for you for fighting for your baby! One of my greatest regrets is not fighting harder for my daughter sooner.

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    1. I think Mummy instinct kicks in – when your daughter had a twist that couldn’t reverse, your instinct told you she had to be fully checked out. Same thing for me, it just happened earlier as this was the twist that would have taken him from us x

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  5. Reading your comment about Gaviscon really struck a nerve with me. The second hospital we were sent away from (a highly renowned children’s hospital) prescribed Gaviscon and said my daughter had reflux. 4 days later in our third different hospital she had emergency surgery. Thank God we mummies persist for our children. Xx

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  6. I’ve a very similar story. We live in the Netherlands. We’ve gone through similar misdiagnisos, eventually volvulus and doctors not being able to save most part of my daughter’s intestines. She barely survived. Now, as she almost turns 3 I am still not able to look at the pictures we took in the hospital when she was 4 weeks old and dying. I’m really happy we have her with us but us has been tough. She still suffers from a variety of problems that doctors state is not due to any of her medical history…. but I’m not sure. Good to read other stories, so thanks for sharing!

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