An IUGR Story

This story, written by Mum Lorraine, is about her daughter Evie’s IUGR journey.

When your baby is diagnosed with Intrauterine Growth Restriction (IUGR) you cannot help but Google and I found Google only gave me more questions rather than answers. You want Google to say ‘all will be fine’ but Google can’t as there are so many reasons why your baby may be IUGR, so many differing causes, and the reason why your baby is IUGR is what will determine the prognosis and potential outcome.

My daughter’s IUGR was picked up at the 20 week scan, along with an echogenic bowel, oligohydramnios (low amniotic fluid) and two vessels in the umbilical cord instead of one. I was warned I may need to make a decision on whether to terminate the pregnancy and referred for further tests.

Evie with tube — in NICU, 1 day old

After two weeks in the Neo Natal nursery, we were allowed to take James home as they believed he was feeding ok from a bottle and as he was stable and off oxygen there was nothing more they could do there than we could do for him at home. Once we got him home he seemed to sleep more than ever and his feeding was most definitely not ok. He would take one suck and then fall asleep so the nights consisted of a constant round of 20 mins sleep, one suck and back to sleep before waking for another suck. Of course, this meant that James was then losing weight. After two weeks at home and visits from the health visitor we were readmitted to the local hospital for them to review and observe his feeding. After a few days in there they sent us home with some Gaviscon.

During the very early weeks James seemed to have every test going — CT scan, MRI, XRays, EEG, ECG and more blood tests than most would have in their lifetime. Back home we tried to get into a routine as our older son, Spencer, was at nursery and our daughter, Emma, was at the childminder’s once a week so she could still see her friends there and keep her space for when I returned to work. It was only a matter of weeks before we were readmitted again, this time after me calling the GP surgery desperately trying to get an appointment as James again was particularly sleepy, sounded very chesty, was taking practically no milk and just looked very grey.

Evie was  6 days old when we took her home — we had to put blankets behind her in the car seat to fill out the straps as we couldn’t get the straps tight enough to her.

She is now 4 years and 8 months old and is a cheeky, stubborn, independent happy little girl, no different to all her class mates!

She is asthmatic, she tends to catch most bugs going and this has often resulted in hospital admissions for IV antibiotics but apart from that her health is good. Evie has always had feeding issues (which is common in IUGR/SGA children) and she now has prescription milkshakes to ensure she receives the nutrition she needs. She is now also receiving growth hormone treatment as her growth has not caught up.

Physically and mentally she is meeting her milestones, doing well at school and her speech is where it should be. She does not need extra support at school (apart from a footstool to reach the sink).

Receiving an IUGR diagnosis is scary. To not know what caused the IUGR is an added worry. The vast majority of IUGR/SGA babies catch up. Some, like Evie, don’t. I found Health Visitors and GPs didn’t really understand the intricacies of an IUGR/SGA diagnosis and what that can mean for some children and their families.

I found myself googling even more after her arrival and thankfully found the CGF two years ago. To talk with parents who understood and had the same challenges with their children was a great support.

IUGR/SGA with failed catch up growth is, thankfully, relatively rare and often hard to find more information about, which is why I chose to share Evie’s story, in support of the Child Growth Foundation and the hope that we will raise awareness and reach more families and provide them with the listening ear and support that they are searching for.

Evie on first day of school, at 4 years 4 months