Stevie White and partner Clinton from the West Coast have spent more than 100 nights at Ronald McDonald House South Island prior to and after the birth of son Harvey. Harvey was born prematurely and has a cleft lip and palate which would require ongoing treatment in Christchurch. 1 in 700 children are affected by cleft palate.
Stevie shares their journey with Harvey over the last 19 months.
I suppose our journey first started when I went into labour at 26 weeks. I was on the West Coast and was still working. I went to Greymouth Hospital to get checked out and sure enough I was going into labour. They flew me over to Christchurch and I was in hospital for a week and a half while they tried to stop it- which they did. While we were in hospital, we had a scan to check the growth of the baby so they knew what size baby they were dealing with and that’s when we found out about his cleft lip – he was about 27 weeks.
When I found out about the cleft, I was devastated. I was so wrapped up in him coming early that when we went for the scan it didn’t cross my mind that they might see something else. I had never met a cleft baby or seen one before. I went online and joined some support groups and learnt a lot about it. It opened your eyes to a whole new world – that there’s tonnes of families going through it, and there’s so many different types, and they’re all gorgeous.
Because we lived so rurally, they wanted me to stay in Christchurch just in case I went into early labour. I was at Ronald McDonald House for 5-6 weeks and then I was able to go home. But following the next scan, they found there was too much fluid around the baby so they sent me back to Christchurch, and the House to be monitored.
Two days later I went into labour spontaneously and wee Harvey was born two hours later.
When he arrived, it was amazing. It was just relief. He still arrived a month early, but as soon as he came out, he looked exactly like his scan pictures.
We were able to spend some time with him in the maternity ward, but then his blood sugars started to drop and he wasn’t feeding very well, so he was sent to the Neonatal Intensive Care Unit (NICU) where he spent the next five weeks. I was really cut up when he moved to NICU and being separated from him.
Ronald McDonald House South Island was just amazing in all this.
When I was still pregnant, I was grateful that we were here and so close to things, and that we could just hang out at the House because I wasn’t supposed to be doing much at all and the kids were really happy they had the playground, the art room, and there were other kids around.
I found it really comforting after we found out about his cleft palate, being in the House talking to other families. You realise so many families are going through such hard times, that this is nothing. You just do what you do. Everyone around here is so strong.
We also met another family at the House who were getting surgery for cleft palate. It was good to be able to talk to another family going through the same thing.
Towards the end of lockdown, it was quite noticeable Harvey was still struggling with feeding. He was still having the majority of his feeds through a nasal tube. The plan was always for him to come home and establish feeding with his bottle over the coming weeks. But as time went on, and after trying a range of different things, it became clear that this potentially wasn’t meant to be.
I had been looking into alternatives including Gastrostomy tubes (G-Tube/ PEG)- where a tube is inserted through his belly directly into his stomach. This would be a more permanent device for us to use to feed him. After discussing it with the pediatrician, he organised for Harvey to come to Christchurch and be assessed by the Cleft Team and Pediatric Surgeon to make sure this would be the best thing for him. After a week in Christchurch it was decided Harvey would benefit having a G-tube placed. We were really lucky and able to get the surgery done a few days later.
It was a hard decision to make to get the Gastrostomy done. After all, it was another surgery and it’s not particularly nice knowing your baby needs that, but the results have been amazing and it’s taken a lot of stress away from Harvey, myself and Clint.
Being in Christchurch and not being at Ronald McDonald House due to lockdown was so strange. Clint came over and stayed in a hotel fairly close by, but it was nothing like all those home comforts you get at Ronald McDonald House.
During Harvey’s recovery we were able to go for walks and often walk past Ronald McDonald House. It was closed up and we couldn’t just pop in and say hello, it was a very strange time.
Recovery from Harvey’s PEG surgery was hard, but since then, it’s been going really well for him. It has been amazing seeing his wee face without all the tape and nasal tube. For us being able to feed him and not be in his face re-sticking the tape down or reinserting the tube has truly been life changing. Within a couple of weeks we noticed how much more relaxed Harvey was becoming when we touched his face and he even started to show more interest in his bottle.
In June, we were back in Christchurch for Harvey to have his lip repair done.
Everyone was really excited for us that he was getting it done, but I found it really emotional. I’d grown so attached to his big wide smile and he’s your baby, you just can’t imagine him changing, you just love how they are. I look back now and think about his little cleft with so much love, but his new smile is just as amazing.
This time we were back at Ronald McDonald House. We hadn’t seen anyone since January so it was really cool to catch up with the team and for them to see Harvey.
Clint stayed at the House while I stayed at the hospital with Harvey. It was great for Clint to have that home base to come to and from and the support network that went with that. It’s something we will always be very grateful for.
Harvey’s procedure went great. We were just totally blown away by the results. His recovery went really well and one day after surgery he was already showing off his new smile.
Harvey is now 19 months old and he already has a huge personality. Funny, caring, wild and strong there is never a dull moment in our house.
Our main focus this year has been primarily on Harvey's feeding. He is still currently 100% reliant on his tube feeds. Since his palate repair last November, we had hoped he would take off with his eating but unfortunately he still struggles and shows a lot of distress when he swallows. We have been working with his specialist team over the last six months to try to figure out why he still struggles. Although he has a long way to go, he has come so far and we are so incredibly proud of this amazing boy. He's taught us a lot on this journey and has made us appreciate the small wins in life.
We are so thankful for the caring and welcoming environment Ronald McDonald House South Island provides us with every visit. Not only has the Christchurch House been a place for my other children and family to stay while Harvey is in hospital, it has been a place where Harvey has spent a lot of time recovering after surgeries before being allowed back home to the West Coast.
Thank you will never be enough ❤️
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