This is my latest interview in an occasional series – A Parent Perspective. I spoke to Lorenza about life with her daughter, Eliza, who has a rare genetic syndrome which affects many aspects of her life. Lorenza talked to me about how much she has learned from Eliza – from changing tracheostomies to British Sign Language – and her determination to help Eliza have as full and fun a life as possible, but also the challenges of having a medically complex child.
My son, Ben, is 12 and I knew very little about disabled people or parenting when he was born. My experience of being his mother has been a rapid education in the issues surrounding disability. I find it helpful and interesting to read stories about other people with similar experiences and I hope you might too.
Could you describe your family? Me and my husband, Tom, have two daughters – Mya has just turned 17 and Eliza is six. Eliza has complex medical needs. She’s a character – funny, really strong minded, won’t stand for any messing. She’s great company. She loves being outdoors – I like hiking so I take her, even if that means she goes in the pram or I carry her. Sometimes she will walk. She does horse riding and has just started martial arts, which she’s really enjoying. What is her medical condition? She has CHARGE Syndrome which is quite rare. CHARGE syndrome can affect anything and each child is different. Eliza had a tracheostomy from birth until recently, which was extremely challenging and took a few attempts to remove. She has a lot of breathing difficulties and has just had her tonsils removed. She is tube fed through a gastrostomy button. We are trying to make steps forward with oral feeding, but it’s not simple. Balance and mobility are also a problem for Eliza. I don’t compare her to any other children. As long as Eliza keeps hitting her milestones in her own time, I’m content with that. When did you realise Eliza might have CHARGE syndrome? It was a very quick delivery and it was apparent in labour that something wasn’t right. She wasn’t breathing when she was born and then things escalated. It was a while before I got to see her but I don’t remember that period very well. My husband and eldest daughter came the next morning to meet Eliza for the first time and were greeted by me and lots of doctors and nurses rushing Eliza up into intensive care. We weren’t sure what was going on. We were at our local hospital for two weeks, and then transferred to a more specialist hospital and stayed there for 10 weeks. My husband and I practically moved in while my eldest daughter came back and forth. The doctors realised that whatever was going on with Eliza was not straightforward. We’d hear about one challenge, and then it would be the next one. She was having surgeries. Eliza started thriving as soon as she got a tracheostomy though. It was a busy time. Did you have much support with the tracheostomy and feeding tube once you got home? We did tracheostomy and naso-gastric (NG) tube feeding training in two weeks at the hospital and then we went home. I’d really looked forward to bringing Eliza home – I had hoped and prayed for it – but that day was probably the hardest day of my life. I wanted to take the whole hospital team with me. I cried all the way home and then family greeted us but I just wanted to go and hide away. You can’t prepare yourself for that strange feeling where you are happy to get home, but also you know it’s the beginning of coping with all these things on your own. If I ever wanted the community nursing team to come and help with the tracheostomy change, they would but I didn’t really know what I should be worried about or what was normal. We never slept in those early days. I have people say to me all the time, ‘Oh, I don’t know how you do it. I couldn’t do what you do.’ And my response is you would, because you have to. There’s no other choice. At first I was really against having any carers and I did everything. It felt like a defeat to admit I needed help, but I should have done it sooner. When Eliza was around eight months old I said I couldn’t cope any longer. We started having carers to help with the nighttime and it was the best thing ever did. The daytime feels so much easier when you’ve had a full night’s sleep. I say to friends who feel the same way I did, we don’t have to do everything ourselves. It’s strange welcoming people into your home but they soon became part of the family. We had two carers and they still now come to visit Eliza. Within a week of her tracheostomy being removed, her care package was reviewed to reduce the budget and then carers stopped coming. It’s made life a lot harder. I’ve found it difficult to leave Eliza with family members because she has a lot of medical needs. I think it’s a big responsibility and it’s really hard to let go. I wasn’t prepared for the change of removing the tracheostomy – I am still learning that I can relax a little bit now her breathing is more stable. But it’s hard to switch off when you’ve been in that fight or flight mode for so long. How do Eliza’s medical issues affect her day to day life now? Tracheostomies are very time consuming and require 24 hours a day supervision, so once we removed the tracheostomy life got a lot easier. But life is challenging for Eliza as every aspect is affected – she is deaf so communication and listening are difficult. Socialising, school, and trying to make connections with her peers is hard for her. She has a lot of sensory processing difficulties and is working on her balance. We have also recently started her on daily injections of growth hormones which is another thing for me to learn. I’ve learned to tube feed, change an NG tube, change a gastrostomy button, a tracheostomy, and now injections. I remember watching the first tracheostomy change and I was absolutely petrified, but now nothing fazes me. I think these injections will become normal for us. How is Eliza finding school? We shielded her for the first half of Covid so she missed a lot of reception, and she still misses quite a lot of school due to hospital stays and appointments. She’s in year one at a mainstream school and it has been difficult at times, but she’s made friends and enjoys school. Socialising isn’t easy for Eliza. She has quite a lot of autistic traits so it is difficult for her to fit in, but she loves being around people. I know that you have learned sign language to communicate with Eliza. How does that work in your family and beyond? Eliza was completely mute when she was born and we didn’t hear her cry, laugh or speak for a long time. She was about three before she was able to bypass the tracheostomy and make any noise. She is also deaf. We went on a basic course to learn sign language, brought it back to Eliza and she picked it up straight away. That motivated us to carry on learning and teaching her. Me, my husband, my eldest daughter and all the extended family have learned Level One British Sign Language. I didn’t know much about sign language, or the deaf community, and signing doesn’t come naturally to me as a hearing person, but I’ve now completed my Level Three. Eliza is now speaking but she uses a mixture of speech and sign at home and at school. When she’s tired or unwell, she’ll revert back to Sign because it’s her first language. I’ve gone on to set up my own business teaching sign language to children – I think it’s really important that we bridge the gap between the mainstream, the deaf community and complex needs children. I’m seeing so many children with different needs coming on to my classes, wanting to learn. During Covid when we were shielding Eliza, not leaving the house, I was climbing the walls so I started making an app to learn Sign language. I think everybody should know the basics of sign language, so if they came across somebody using Sign they could ask them if they’re okay. Just be a friendly face or say hello. That is my aim, to bridge the gap. The app is free to download and is called Eliza Says. Learning Sign Language is just one of the ways you and your family have changed since having Eliza. How else have you changed? I’ve learned so much through Eliza and I have changed for the better. I am more understanding, I have more compassion. I’m not strong all the time and I’m not always looking on the positive side. Eliza had a surprise hospital stay recently, the day before we were flying abroad, and I had some down days. It’s important to acknowledge that we’re not robots, we all have emotions. We’re not strong all the time. Quite often if I’ve had a rough hospital stay, you will find me at home for a week in my pyjamas, comfort eating a lot of junk, regaining my strength. Then I’m back in the world. When we were pregnant, it never crossed my mind that there could be any medical needs or any challenges. Now I have a lot more knowledge and I appreciate the challenges other families are facing. Are there things that frustrate you? Eliza is hitting milestones that we never expected she would but people have a tendency to underestimate how hard she has to work. People forget that she’s got a lot of serious medical things going on. Also, a lot of people still struggle with the concept of tube feeding. I explain that she is tube fed, she can only eat purees, but they still put a meal out for her to eat. Or at a party they’ll still offer her birthday cake. Food means nothing to Eliza because she’s never had that. I find it really frustrating to keep reminding people of that. Where have you found support, people who understand? I have a really good support network around me, from professionals, to family and friends. At first, I didn’t see how important it was to find people similar to us. I was just surviving each day. Then I was at a baby class, even though I hated it. I’d come in with medical equipment and sit there not joining in with any of the conversation the other parents were having. I felt really isolated but I did it for Eliza because I knew it was important for her to go to these things. Another mum walked in with a child with an NG tube and we made friends immediately. I appreciate there will be many parents that will not take the plunge to do classes like that. They won’t go on family day trips or holidays, and I know why – it takes a lot of strength, courage, hard work and planning just to get out of the door. But I didn’t want to stay at home with Eliza. I wanted her to enjoy things like everybody else. We go on holidays even though it takes me months to plan and I hate it until I actually get there. She’s nearly six and it’s taken me this long to have the confidence to be able to do holidays. There are so many positives. I don’t believe Eliza would be the same person if she didn’t have all these challenges.
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