Virtual Convention 2020

Virtual Convention 2020

Virtual Convention 2020

In October we delivered our (un)usual annual convention, which means that traditionally, on these pages, we bring you gloriously amazing pictures of fancy dress frivolity featuring superheroes, Disney characters, festival hippies and so much more. This year, we bring you a zoom meeting…

Yes, it was different. Yes, it was COVID and yes, it was lockdown. But we made the best of it! We were actually very nervous about it. We had some fabulous speakers and presentations lined up. We had the wonderful membership family ready to engage. We had an army of volunteer support. But what if the technology lets us down? What if broadband breaks? What if Zoom melts?

What if Neil sent out the wrong link for the first day of the Convention and only discovered the error half an hour before it was due to start! Surely, that would never happen – erm, well yes it did, and he is still very embarrassed about it!

That hitch aside it all went swimmingly well. All three days were thoroughly engaging, interesting and informative. We shouldn’t really be surprised. The Child Growth Foundation is built on connecting parents & families with each other and with the very best experts in the field. And that is what we did again. Fantastic speakers but more importantly all those who attended came wanting to learn, wanting to ask, and wanting to share. We all agreed the lack of the physical togetherness was a shame, but do you know what – it still felt a very close and intimate day, it felt like we all connected and it turned out to be a very personal, and enjoyable few days.

A Convention, but not as we know it…

Saturday 24th October – SRS/IUGR/SGA

The first day covered SRS/IUGR and SGA and was kicked off by a live Q&A session with Dr Justin Davies, that could probably have gone on all day! It didn’t, which is just as well as there were some fabulous talks lined up. Dr Helen Storr provided an update on the GRASP project findings and Dr Deborah Mackay gave us an overview of genetic diagnosis of SRS and SGA, as well as an update on the SRS research study the CGF is currently funding. We broke for lunch, and some left their cameras on so we could see what they were having! Before we all returned for an afternoon that explored adult health issues in SRS with Dr Karen Temple and cognition and behaviour issues in SRS with Dr Megan Freeth. The day finished with a group chat.

The support from the speakers was fantastic, some were recorded and some were live and we have to say a huge thank you to Dr Temple who was actually on holiday, well coming home from holiday, and following her recorded presentation came on live from her car on the motorway (she wasn’t driving!) to answer questions. It was amazing of her to give that time to us, and we were delighted to see her get home safely and be welcomed home by a very excited puppy!

Dogs were quite a theme of the three days, with many zoom-bombing pooches stealing the limelight of the talks!

Saturday 31st October – GHD & MPHD

Day two covered GHD and hypopituitarism and again, was very well attended. It was opened by the wonderful Dr Harshini Katugampola with the fabulously titled presentation “It Takes Two to Tango” which covered growth and puberty.

This was followed by a live, and very hands on, presentation by Endocrine Specialist Nurse, Claire Westcott, who talked about emergency adrenal crisis, sick day rules and management. This session walked us through how to inject, with live demonstrations involving oranges and out of date medical equipment! The oranges felt no pain from the injections but sadly, the medication was out of date so no discernible growth benefit was recorded!

After lunch Dr Helena Gleeson provided a much-needed guide to transitioning to adult services and after that Nurse Specialist Helen Smart gave a thorough overview of management and treatment options for GHD & hypopituitarism . The day was again finished off with a group chat that ended with an impromptu musical performance!

Saturday 14th November – Sotos Syndrome

The third day of our convention focussed on Sotos Syndrome and opened with a presentation by Dr Megan Freeth on cognition and behaviour issues. After a short break we returned to hear a super introduction to Sotos Syndrome from Dr Kate Tatton-Brown, followed by many, many questions.

Then came the amazing double act of Dr Alison Foster and Dr Alice Welham who took us through Sotos syndrome the pre-teen years and then Sotos syndrome the adult years. It was a really well-developed programme that gave attendees much opportunity to discuss concerns, and the speakers hung around throughout, answering questions and providing guidance. The third day was incredibly well attended and the group chat to finish the event went on for some time with a great deal of bonding and peer support. We received a lot of offers of help to build up our Sotos support network and we are incredibly grateful and look forward to what we can build.

Seeking Support for an IUGR diagnosis

Seeking Support for an IUGR diagnosis

For IUGR Awareness Day (Intrauterine Growth Restriction) we are fortunate to have a guest post from Susanne Remic, GhostWriterMummy. For anyone who has read her blog, you will know that by talking about her pregnancy experiences and campaigning for better support, she helps countless others going through similar experiences. In recognition of this, she was a finalist at this year’s Tommy’s Awards for Mum’s Voice Award. This is her IUGR experience.

At 29 weeks gestation, we were told that our 4th baby wasn’t growing as well as had hoped. We’d had a growth scan due to previously having had two SGA babies, and the hospital had wanted to keep an eye on us as a result. We honestly thought that this growth scan would show a happy, healthy baby too, just like the others.

I remember that the air inside the doctors office felt so still as we waited for her to come through following the scan. I was perched on the end of a bed, feet dangling over the side. My husband was standing awkwardly, commenting on the lack of seats for dads. A normal day. Feeling normal. Smiling. And when the doctor swept into the room, we had no idea what was to come. There was no way we could have anticipated what she was going to tell us.

We’ll try and get you to 34 weeks.

We’ll deliver via c-section and baby will go to special care.

You’ll need to come back every two weeks to monitor growth.

I felt the room slide. The air was rushing from the room and the words weren’t making sense. But I was supposed to be having a VBAC! I wanted to go the whole hog- 42 weeks was the norm for me. Not 34! This baby was supposed to be small, but perfectly healthy. None of this was supposed to happen this way!

Elsie newborn

When we left the hospital, I started to google low birth weight babies and four little letters kept popping up over and over again. IUGR. Horror stories of tiny babies, too small to fight to be alive. Too weak. Born too early. I searched for blogs to read so that I could get a better understanding of what we were facing. I joined IUGR support groups on Facebook. I craved information but there was really very little that anyone could tell me.

At our next scan we were told that reduced blood flow was depriving baby of essential nutrients and oxygen, and this was probably the reason why she wasn’t growing. We were told to come back weekly so that they could monitor us closely.

Medically speaking, the care we were given was second to none. Emotionally, I am still paying the price today, 18 months on.

Elsie

Google was not a good place to be. As my hand rested on my tummy and I willed my baby to move, Google was most definitely the very worst place to be. I read story after story of babies born too early and too small. Babies facing a lifetime of disabilities. Babies who never made it home. And as each growth scan showed us a baby that still was not growing well, the fear and anxiety we felt began to escalate. Nobody could give us any answers and while we understood the reasons why, we were still frustrated and scared.

If our baby was going to need special care, how would we know where that ward was in the hospital? What would happen in there? Would I be able to stay? Would we be transferred to a different hospital closer to home? Would there be any lifelong disabilities for our baby? Why was she IUGR? Was it something I had done wrong? The medication I took to stop the sickness? Did I eat the wrong thing? Too much? Not enough? Should I rest more? Or move more? Should I prepare for the worst? Was my baby even going to make it? Was there a genetic reason for her IUGR? Would there be something one, maybe even two years down the line?

And while our questions couldn’t be answered, we had nobody to even ask them to. Nobody to hold our hand. Nobody to tell us we’d be ok. Nobody to listen.

The IUGR support group on Facebook literally saved my sanity. Writing about my pregnancy helped so much too. Not only was it an emotional release for me, but it encouraged other women to get in touch and tell me their stories too. Some babies made it, and some didn’t.

I had to focus on MY baby. Getting through to 34 weeks, and then to 37. That first cry in the operating theatre as she was plucked from my body. That first feed. That first smile. First laugh. First steps. First word.

She is here. We are here. And we are slowly finding support too.

Elsie’s 1st Birthday

There is now a UK Facebook group for parents of IUGR babies and I hope that the members find it of comfort during what can be a terribly lonely and confusing time. There is also the Child Growth Foundation, a charity who reached out to me recently to provide support and advice. The support is out there if you know where to look. I hope to be able to signpost that information and support so that other families that walk this path do so with a light to guide the way. IUGR can be a terribly lonely and frustratingly scary path; I don’t want other families to walk it alone like we had to.

An IUGR Story

An IUGR Story

In our inaugural blog post Lorraine, one of our members, talks to us 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. After three long and scary weeks of tests, including a specialist foetal renal scan in London to check her kidneys and a CVS (which ruled out genetic conditions which were ‘incompatible with life’), the conclusion was that the IUGR was being caused by placental insufficiency. What caused my placenta to not form properly we still don’t know, but as a result my baby wasn’t receiving the nutrients it needed to grow.

I was advised that outcome was unknown. I was prescribed daily asprin, fortnightly scans and fortnightly urine/blood pressure tests. Every fortnight I would arrive at the scan wondering if today was the day I would be told baby had stopped growing and we would need to deliver.

Somehow my little fighter made it to 36 weeks gestation and was delivered by c-section weighing 4lb 1oz, which meant she was classed as Small for Gestational Age (SGA).

Evie with tube — in NICU, 1 day old

Thankfully she had no medical problems. She was fed by tube for the first few days in an effort to ‘feed her up’ as feeding would burn precious calories and she had a little heated mattress as she struggled to regulate her temperature, but we took her home on Day 6.

Evie in car seat — 6 days old when we took her home — we had to put blankets behind her to fill out the straps as we couldnt 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.

Evie on first day of school september 15 age 4 years 4 months

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.