Story of Jess

Our experience started before jess was born, at my 20 weeks scan the sonographer said my baby was smaller than average and she wasn’t too concerned yet but would need monitored. A few weeks later I had another scan the midwifes face immediately changed as she did measurements on my baby, she told me jess was extremely small, I was then sent into a room with a doctor who told me jess was on the 3^rd centile line and that approximately 5% of babies are born like that, she referred me to the RVI hospital to foetal medicine as she thought there maybe a problem with my placenta.

At 26 weeks I met with a professor from the RVI, he scanned me and noticed jess had put weight on since scanned at my local hospital, he confirmed what my local hospital said and that there was a problem with my placenta causing her to be small but he noticed jess had put weight on since being there and although small she was safer to be inside me if continued to gain as she would have two problems against her, being small and premature but he said that cases like this delivery would be at 32 weeks. He continued to monitor me weekly and jess continued to gain weight at 32 weeks he referred me back to my local hospital for weekly monitoring.

At 35 weeks jess’s weight dramatically dropped in the space of a week, the decision was made to be induced as quick as possible, the good news was that jess had made it this far and 37 weeks was classed as full term, so she wasn’t as badly premature as they thought, they said if she was drinking and everything was ok that she could possibly go home after a few days.

When I went in for my induction they warned me that with jess’s size she may struggle and that there was a 50% chance her heart rate would drop if that did happen I would be taken for an emergency c section, but again against the odds my little jess’s heart rate never dipped once and at 4.34am on the 23^rd of June my beautiful girl came in to the world naturally.

I was totally dazed off the gas and air, but I remember looking down and seeing her big blue eyes open and look up, but she was so tiny, then I felt a huge yank like someone was pulling my insides out the midwife looked like she was panicking and told me later that my umbilical cord was the smallest she’s ever saw, there wasn’t a lot of room to cut the cord. I was still dazed but I remember doctors and nurses coming in the room as they took jess over to the oxygen table I couldn’t see anything that was going on and I couldn’t hear her crying, but they assured me she was breathing. After what felt like a lifetime they brought my gorgeous baby over to see me for a few minutes than took her straight to special care.

They wouldn’t let me or my boyfriend go with her, it was another 2 hours before I was allowed down I was so excited to see her then I walked in the room she was in an incubator with wires and monitors all over, I wasn’t allowed to hold her or even touch her, they explained they need to do a few tests to find out why she was so small and that she would be in for a few weeks, jess was on the 0 centile line she had dropped from the 3^rd, her placenta was also sent away for testing as they thought this was the reason to her being small.

A few days later a doctor came in and was measuring her body and head, this doctor didn’t see any of the other baby’s in special care, then he explained how he would like our permission to run a genetic test, he explained how he thought jess had some dysmorphic features but not worry as they were just to rule things out, in my head I though how cheeky, my daughter doesn’t have dysmorphic features there’s nothing wrong with her she’s just small.

Weeks passed and I watched baby’s come and go into special care and still no further forward as to when I could take my baby home, jess was born at 3 pound 8 but dropped to 3 pound 2 in the first week but gained weight every week after and was doing ok, she got promoted to a cot and I thought I was getting closer to getting her home, every week i would ask if the result came back off the placenta or genetics and every week they’d say they hadn’t, nearly everyday blood was taken from my tiny little girl, test after test but still no further forward.

When jess was 5 weeks old I got a call to meet her doctor at the hospital in my head I thought to myself I hope this don’t take long I’ve got to get my son from school, there isn’t anything wrong anyways! But at least I’m going to get her home.

Me and jess’s dad were taken into a room with her doctor and one of the midwives on special care, he was babbling on about genetic tests and why they do them the same stuff id already knew I looked to the side at the little table and saw jess’s name with lots of medical names and a line graph, then the words wolf Hirschhorn syndrome circled.

I listened to him as he broke the news that my daughter had a very rare condition called wolf Hirschhorn syndrome, I didn’t even have time to process that before he went on to say she would need 24 hours care all her life and that she might not walk, talk or develop the way she should, there was a range of disabilities that came with wolf hirshhorn but as to what jess would have only time would tell. My first question was “how long will she live?” and he couldn’t answer it, but he did say they have a short life span but no one can no the answers to any questions I asked as each child is different, I made an excuse to leave the room I couldn’t be in there any longer with both the doctor and midwife sitting awkward silent and staring at me. I left special care and googled her syndrome, page after page of nothing positive the list of complications was unreal I just wanted something positive to cling to, but I couldn’t find it, I kept thinking this isn’t my jess not my baby, I walked into the playground to pick my son up and my friend asked how jess was I think that’s when it hit, it was my little girl she did have this. I have 3 children as well as jess, Shannon 15, Skye 12 and McKenzie 7 they’ve always been fit and healthy, you kind of take that for granted, you think it’s never going to happen to you, but it can, and it did.

About 2 weeks later jess was allowed to come, I was happy and excited but at the same time I was terrified, in those 2 weeks we learned that jess has 2 holes in the heart ( her ASD will be operated on this year ) dysplastic kidneys, cysts on both kidneys and in her brain, all of which are monitored regular, because of jess’s heart condition she got tired out easily while drinking bottles so her feeding tube stayed in and is still in to this day, she takes around 30/40ml orally and 30/40ml gravity feed every 3 hours on a good day she can drink full 80ml bottles but this is rare.

The weeks after jess’s diagnosis are a blur, I just couldn’t see any positives I loved my daughter so much but knowing what she had it literally killed me inside to the point of nearly having a breakdown, I seemed to focus on all the negatives without seeing what was right in front of my eyes my gorgeous special unique little girl, I would wake up in morning and be like a zombie getting through the day, I pushed everyone away from me including my boyfriend who ended up moving out 3 days after jess came home for about 2 month.

But then amazing things happened, jess was smiling, making baby noises and those little legs just couldn’t keep still she was kicking all the time, she was hitting most her milestones for her age, she even managed to roll on her side at 3 and a half month even earlier than she should have, its rare but she can do it she uses her legs and swings them over, she looks at you with those big blue eyes as you talk to her and smiles away, she also shocked her doctor at a recent appointment on how well she is doing he was especially pleased to see some muscle tone to her legs.

I joined both the u.k and American wolf Hirschhorn page on Facebook and added people with children like jess, and things weren’t half as bad as what was in my head, I’ve read all their stories and continue to follow their progress as do they do with jess. Some walk but don’t talk, some talk but don’t walk, some do both! Each child so different yet so very special in their own way. I do have some emotional times when you hear of the bad side of this syndrome, just after Christmas I saw an American mum posting a picture of a WHS baby boy who sadly gained his angel wings, but you can’t compare your child, and you can’t go on living with negative thoughts you just have to take it by the day or you’ll never get through this, think positive and receive positive.

Jess is nearly 7 months and apart from not having much upper body strength she is doing so well and continues to prove people wrong. She is such a quiet, placid, happy baby and knows how to work that smile or fake cries to get a cuddle.

I don’t know what the future holds for Jess no doctor in the world has those answers, but I do no she fought the odds to be here and she’s strong she will fight her way through any challenge. All wolf Hirschhorn children are strong, brave, unique, beautiful and so very special in their own little ways.