A Family’s Trauma. A child who is alive because of Mum’s instinct

“Your daughters genetic testing came back that she has Hereditary Fructose Intolerance”

You would think that would cause feelings of worry or sadness, but in that moment it was an overwhelming feeling of pure relief. 

Nieve had been unwell since birth, I was forever taking her to be seen. I knew something was not right, my instincts were telling me that she was not okay. I had a fantastic health visitor who listened and believed me. She could see exactly what I was seeing and gave me the confidence to trust my instincts and to advocate furiously for my daughter. Thank you Debbie.

Nieve cried the majority of the day. Real tears began streaming down her face at just 9 days old. It wasn’t a niggle, it wasn’t I’m hungry, it was Nieve desperately trying to tell us that there was a problem. I rang the GP to say she is LITERALLY crying for 20 hours a day … to which I was told babies cry and sometimes it feels constant, and was then quizzed about my mental health.

Nieve vomited profusely from a few days old. My son had a known dairy allergy so when she was not able to feed properly from me and not making her birth weight back, she was quickly put onto hypoallergenic milks (high fructose corn syrup being high up on the ingredient list). The vomit would burn her as it came up causing her to breath hold and choke, and at least once after each feed it was a full projectile vomit. I spoke to the GP who assured me that babies posset, some more than others, so it was a touch of reflux. Stop overfeeding her and here is a prescription for Gaviscon … which then turned in a prescription for a PPI SYRUP. Nieve would act like I was poisoning her whenever I (religiously) gave her the 2 doses each day. I was told babies don’t like the taste, its normal.

I knew my daughter was in agony. She would arch her back then curl up then arch her back whilst screaming. I was told by the doctors that I couldn’t know she was in pain, it was just normal trapped wind. Do some bicycle legs, have you tried baby yoga?

This daily cycle of projectile vomit, chronic diarrhoea, constant arching and screaming in pain. We were told to wean early, but only to use pureed fruit and vegetables which just made things worse and we then developed bloody stools and a feeding aversion. 

We were admitted every few weeks to the children’s ward, where they would find nothing apart from elevated liver numbers (they can increase with a virus, mum) or UTIs caused by E-coli from the uncontrollable green diarrhoea.

At this point, I feel it is important to say that as much as my daughter was being completely failed by the NHS system, we came into contact with some absolutely beautiful staff on the wards. HCAs and nurses who would hold my screaming child for 5 minutes so I could go and sob in the toilets, or would simply tell me to keep advocating for her because they could absolutely see why I was concerned for her. The paediatrician we were under tested and treated for all the common things, and was very open when we had tested for everything within her general paediatricians knowledge and referred us to specialists … who bounced us back when Nieve didn’t respond as they would expect and they couldn’t immediately put their finger on an answer. I appreciated her honesty and her taking the time to listen and fit in appointments at short notice; I believe she truly did as much as she could to help Nieve within the confines of the system.

When Nieve was 9 months old, we were on the ward yet again and for the first time an x-ray was taken due to the consultant being able to feel her liver was enlarged, combined with her blood results. This consultant came in and said the words which strikes fear into any parents heart – she was going to seek ‘input from the oncology team’. Nieve did not have cancer, that was very quickly ruled out by giving her a general anaesthetic and putting her through an MRI machine, but it did then start a series of events which ultimately lead to myself being accused of making Nieve sick otherwise know as ‘Fabricated or Induced Illness’, which is also known as Munchausen by Proxy. 

Every morsel of food I provided my daughter with was scrutinised, every (PRESCRIBED) medication had to be justified before administering. Every conversation with a doctor or health visitor had to be witnessed by 2 people (with no medical training, some were not even parents) and verified between them. 

Christmas Eve arrived, and I spent the morning with family preparing for Nieves first Christmas, with 24/7 observation in my home due to the allegations that I was not keeping her safe. In the afternoon the screaming turned to a constant whimper which set alarm bells off in my head. I knew I had to play it ‘by the book’ due to the ongoing court case, so I called 111 who said a clinician would call back but she didn’t raise any immediate concerns with them. We carried on as my daughter whimpered. No temperature or anything that made anyone else worry, but my instinct knew something was seriously wrong so I had to make the decision to ‘ignore’ the advice of 111 and put Nieve in the car and drive to A&E. It was made very clear to me whilst I was strapping her in that 111 were not concerned and I should wait for a call back. I knew full well that it would count against me in court, but my instincts told me to do it regardless.

On arrival to A&E, she was triaged immediately due to her age. Everything looked normal but the nurse could see that Nieve was not responding as a child her age should and reassured me I had done the right thing. The last check required was a blood sugar and I am not completely sure what happened after that as within seconds of the number flashing up we were whisked to resus, cannulas were put in both of her tiny hands and doctors and nurses were working to correct her serious hypoglycaemia. Once Nieve was responding normally, I was advised to keep her topped up with apple juice and moved round to the ward. Throughout the night, whilst on IV dextrose supplemented with apple juice and flavoured yoghurt, Nieves blood sugars kept dropping which couldn’t be explained. 

111 called the next day apologising for the delay … if I had put Nieve to bed and not acted on my instincts, my child would be dead.

The theme here is Nieve didn’t fit into a box, her symptoms couldn’t be explained. She was a puzzle. It’s not how a normal child would present/react. All completely true! Logically you would think the next step would be to investigate the less common answers, right? 

Wrong! Instead the next questions were: 

-  Is mum not feeding her appropriately?

-  Is mum giving her laxatives?

-  Mum has depression, is that the issue?

-  This isn’t what we would expect, is mum telling the truth?

-  Is mum making up or exaggerating the symptoms?

-  Why is mum happy for this child to go through unnecessary testing?

-  What is mum doing to cause this?

I was not the one failing my daughter, they were failing her. The only ‘good thing’ about being accused of and being taken to court for alleged FII is that genetic testing had to be done. So that was cooking away in the background.

I ended up being placed with both of my young children at a parenting assessment unit 200 miles away so I could be observed by both a person and CCTV because the (non medical) professionals observing me felt that as Nieve wasn’t improving, I must still be finding ways to make her so poorly. It was that or foster care … so I went. The staff at the unit kept an open mind when taking us on, and made their own assessments based on what they saw. 

The day I got the ‘your daughter has HFI’ call, they understood the relief, and that changing her diet would allow her a quality of life. They were also on hand to calm my sheer panic I realised I needed to cook her a meal and that the only suitable thing I had was a frozen chicken breast!

Within a week Nieve started to sleep more than 2 hours at a time in the night, and stopped waking up screaming. Then a few days after that she had her first ever solid bowel movement at the grand old age of 19 months! She started smiling more and became a chatty, energetic little girl. Slowly mealtimes became fun again and she enjoyed trying new safe foods. Within a month my bald princess started growing hair and I needed to buy her new clothes as she had an enormous growth spurt having not grown properly since birth. 

Nieve is now approaching her 4th birthday and is thriving. She loves unicorns and playing outdoors … and is a typical second child(!). Many babies like Nieve become desperately ill or do not survive infancy due to HFI going undiagnosed. I am very lucky that I had people around me to give me to confidence to keep shouting and advocating for Nieve, otherwise this story would’ve had a very different outcome. 

What my story isn’t though, is unique. I am not the only parent accused of FII and threatened with a child being removed to foster care, or indeed having their child removed or worse. And this is what led me to working with this charity, because if my experiences, or Nieves story, can help just one child and one family, then at least something positive will come out of what has otherwise been absolute utter hell for my little family.

If you have found yourself on this website, reading this blog because you are worried about your child, please reach out to us. 

If you are a medical professional, please read around rare diseases such as HFI, and remain professionally curious when children present with an unusual history.  

And if you only take one thing away from this post, a parent’s instincts are strong. If your instincts are telling you there is a problem, then be the voice your child needs and make it heard.

*Childs name has been changed to protect her identity.

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