The following story has been provided to us by Harrison's family and has been included exactly as received.
Our names are Barry and Michelle. We are the proud parents of two little boys. Our first son’s name is Samuel, and he is four and a half years old. Our second son’s name is Harrison, and he is two years old, and this is his story!!!!!!
Harrison was born on the 19th November 2007, at the Ballarat Base Hospital. He was born by Caeserian Section. Whilst I was cuddling him for the first time I know something wasn’t right as he was making grunting sounds (sort of like a pig).
As they (the doctor’s and midwives) wheeled him back to the special care nursery, he stopped breathing and they had to resuscitate him. All the while telling me “that he was fine and he will be okay”. He was placed in an incubator and I was told that Harrison had excess fluid on his lungs, so he will need to stay in the incubator for a least three days.
Michelle was finally brought up from theatre and I left the hospital to go and get Samuel for his first visit with Harrison which should have been a happy occasion.
On arriving back at the hospital, a midwife quietly came up to me and whispered that one of the doctor’s needed to talk to me. This was six hours after Harrison was born.
Sam and I went into Michelle’s room, and we were then told that Harrison was born with a Cleft Palete!!!!!! Till this day, nobody at the hospital has told us how they discovered his cleft. We know that they are picked up by ultrasound (which we had a lot of as Michelle had Gestational Diabetes), but Harry’s was never discovered until after his birth.
This was an extremely upsetting time for both Michelle and I. We had to try and explain everything to our families whilst trying to deal with the shock of what was now happening with our lives. I was pretty pissed off and very very angry, Michelle was just so sad. With Sam, we had no idea how he was coping. He kept on asking why Harrison had to stay at the hospital and why were we always crying????? We kept on saying “WHY US!!!!!!!!”
Two days later we were informed that Harry had Pierre Robin Sequence. We were told this as the doctor’s were considering sending him to the Children’s hospital in Melbourne. We asked them what that was, they told was what PRS is, what problems are associated with this condition, and what the treatments are. To find out that this was a life threatening condition made us feel even worst.
Thankfully Harry didn’t have to go to Melbourne (which was a day by day proposition), but he did spend fifty days in the Base Hospital. We did get to bring him home on Christmas day (for about two hours before he pulled out his Nasal Gastric Tube). He got to come home during other days, but he had to spend the night in back at the hospital. So basically our lives were like “groundhog day”. Michelle and I took it in turns staying one night with Harry, and one night with Sam.
Harry had a Nasal Gastric Tube for the first six months, as well as feeds with the Haeberman Bottle. Feeding was a problem because nobody told us about not getting air bubble in the tube, so of coarse he would vomit everywhere. Not many Nursesor midwives knew how to use a Haeberman bottle.
Harry had to sleep on his tummy, in an elevated cot (he still does so now) and he had to have an Apnoea monitor for eleven months.
If we went anywhere away from Ballarat, we always made sure that there was a hospital near by. The only time that we left Ballarat was to go to the Children’s in Melbourne. We were simply to afraid to go anywhere in case something went wrong.
With his Nasal Gastric Tube. We finally had enough of ripping half his skin off his face when ever we changed his tube. He was drinking all his feeds, so we stopped the NGT all together. We got so much conflicting information from health care professionals about what to do with his feeding, we were so confused and angry.
Harry also had to wear a Bone Conductive Hearing Aid as his hearing wasn’t that good because he had glue ears that grommets would fix.
Not everything is so bad with Harry, Yes, we still worry bout him, but he is doing everything that a little boy should be doing. He loves THE WIGGLES, he loves cars, playing with Sam, and he loves to throw a tantrum or two. He is an extremely intelligent little man. Everyday is always a laugh with Harry in our lives. Now that he interacts and plays with Sam, there are non stop arguments and screaming matches, which Harry usually starts.
His language isn’t that good, but it is getting there. He recently had his palette repair and Grommets in his ears. We noticed a change pretty much straight away. He spent four days at the Children’s Hospital, and started eatingpretty much the next day after his operation. Drinking was a bit of an issue, but once he got to drink out of a “Big Boy Cup” he was a lot happier.
For those of you wondering what life at the Children’s Hospital holds, please find comfort in knowing that the staff there are absolutely the best at what they do. They are so professional and caring. Us as parents that have a child / children with PRS, we are damn lucky to have the best people in the world caring for our kids. Words cannot explain how great these people are.
After Harry’s palette repair we were informed that that there is still a little hole in his mouth. The doctor’s want to wait and see how he goes with his language development before decided on whether to operate again, so our ride and the PRS train still continues…..
Having Harry in our lives has made both Michelle and I (and even Sam) more stronger and protective of each other. Whilst PRS is full of lots of “downs”, the “ups” are the better ones that we always remember. With Harry we just don’t know what we are going to get. We love him so very very much.