Only Human – Episode 1 – Liz

Becky Platt: 0:00. Welcome to Only Human, a podcast from Don’t Forget the Bubbles. This is Becky Platt with Henry Goldstein. And these are the stories that reflect the diversity of our community and the multitude of life events that come our way that shape us as professionals, and as humans. Liz is an emergency medicine consultant in Hull. She’s also mum to Amy who has Down syndrome. Her story starts during her first scan with Amy in what was her second pregnancy.

Liz: 0:31: I was pregnant with Amy when I was 27. Previous to that I’d had a missed miscarriage. So I turned up for my scan at 12 weeks, all excited wanting to know what was going on. And unfortunately, there was no heartbeat. The baby had died at eight weeks. When I fell pregnant again, I was invited along to an early scan. So we went along to the eight-week scan, absolutely terrified because of what had happened before. Very, very relieved that there was a heartbeat this time around. But the sonographer was taking quite a long time to look at things and was ‘umming’ and ‘ahing’ an awful lot, which I know now is not a good thing. She asked me if I thought about having screening for Down syndrome. I actually hadn’t planned to at all. I’d thought that it wasn’t going to change what I did with my pregnancy. I felt that I still feel now there’s an awful lot of things that yes, we can screen for. There’s an awful lot of things that we can’t screen for. An awful lot that you can’t prepare for when you’re pregnant. Because it wasn’t going to affect what I did. I hadn’t planned to have any screening. And she said at that point that the nuchal thickening, the thickening at the back of the baby’s neck was so thick at that point, which is really unusual early on in pregnancy, that there was likely that there was something going on. So again, we left the scanning appointment, absolutely devastated, not knowing what was happening. We were invited back very soon afterwards for another ultrasound with an absolutely fabulous radiologists, who we ended up seeing every week and then every other week, for more and more scans. And the more scans we had, the more abnormalities were being picked up. I still didn’t want to go down the formal route of finding out what was going on. But I was very aware that if there were issues I wanted to prepare myself. But I was delaying having an amnio or having any invasive tests because of my previous miscarriage and I didn’t want to risk another miscarriage. Got to about 20 weeks. And at that point, not only had we had lots of ultrasounds, but I’d also had an MRI because there was some concerns about possible spina bifida and hydrocephalus. The radiologist said to me, ‘it’s looking more and more like it might be Edward syndrome’. At that point, something changed in me and I thought I just need to know. I can’t handle not knowing any more. I need to know what’s going on. And I put it off and I put it off and I said ‘yep. okay, I want the amnio, I want to know what’s happening’. She was absolutely ace. We had the amnio the same day, went home and stressed for the next couple of days, Googling all sorts of things and trying to work out what on earth I would do with the results. I had a phone call on day three to say….I can even remember the words. The words were, ‘it’s not Edward syndrome, but it is Down syndrome’. I just remember saying ‘Oh, thank God’. Because of all the things that I Googled, this was the thing that I felt most able to cope with. They invited us and we went in the same day to have a chat with the radiologist and one of the midwives. I remember being given a leaflet about continuing with pregnancy. They were wanting to ask whether or not we thought about termination. And that was really quickly after having had a diagnosis. And I was gobsmacked really. I don’t know, I hadn’t. It hadn’t even crossed my mind. I just wanted to know what this meant for me and what this meant for my baby and for my family. And so I said no, I’ll take the continuing with pregnancy leaflet and we’ll go and we’ll do our own research. And we did the Down Syndrome Association with fabulous. I spoke to one of their advisors and downloaded as much stuff as I could do from their website and did an awful lot of reading around what to expect.

Becky Platt: 3:43 Liz wanted to make sure her family were prepared ahead of the baby being born, and their reactions were a bit mixed.

Liz: 3:51 I then started to think about how to tell people. I wanted people to be able to, my family in particular, to be able to prepare themselves. I was able to prepare myself, my husband was able to prepare himself, but I wanted my family to prepare themselves as well. Because we knew that it was likely that there might be a rocky road, given all the other issues that had been found on ultrasound. We knew that she was likely to have a cardiac defect for example, I told my mom who was incredibly supportive and has been ever since. We told our in-laws. Their only question was, ‘is it a boy or girl?’ which we hadn’t really been wanting to find out at that point. And we did soon find out that she was going to be a girl. And I told my dad. My dad was the one person who said to me, ‘I don’t think you’re doing the right thing carrying on with this pregnancy’. I was absolutely stunned. He was concerned about me and about how I would handle it. I mean my dad never really got to know Amy. He died when she was six months old. He had lung cancer. But I do remember very clearly standing with him and with Amy when she was very small and him giving me the biggest hug and saying ‘you’re doing all right you know Liz’. And that meant the absolute world to me because I I know his thoughts were always about what was best for me. His thoughts about termination were to do with not wanting to put me through any undue stress. But I’m really glad that before he died, he got to see that we were coping and that she was she was doing okay. And I was doing okay. I was on a week of long days, which were 12 hour shifts, at 30 weeks pregnant, and I was absolutely exhausted. I remember sitting at the desk in Children’s ED in Hull saying, ‘ah my back really hurt’s. And one of the nurses said to me, ‘oh, that will go when she’s born’. And two days later it did. She popped out at Easter in 2006. We’d had Easter off. We were going down to go and visit my family, thinking this would probably be the last chance to go and visit them before she was born. We were driving down to Norfolk. I was looking at the clock in the car thinking ‘this back pain’s coming and going a little bit. In fact, it’s coming and going every few minutes. This is a bit strange’. And we got to Lincoln ,when I said to Paul, my husband, ‘we’re gonna have to turn round, I think I might be in labour’. And we did. We drove back to Hull. They gave me steroids, and they started me on infusion to slow down the pregnancy. All of a sudden she shot out. She was a tiny, scrawny little thing, it felt anyway. She was decent weight for 30 weeks. She was I think 1.5 kilos. She was like a little skinned rabbit. They put her on my chest and I remember thinking ‘I can’t see her I don’t have my contact lenses in’ and asking for my glasses. And just wanting to see her before they whipped her off to have a look at her. The room was so busy. Obviously Paul was there, my husband, there were I think three midwives and a midwifery student, and three paediatricians. I just remember being desperate that the paediatricians were there. And the midwife saying to me just before Amy was born saying ‘it’s okay they’re here, they’re setting up’ and just ‘I want the paediatricians. I want the paediatricians’.

Becky Platt: 6:37 Liz went on to have a second child after Amy. The feel in the delivery room that second time was really different.

Liz: 6:44 When I think about the difference between Amy and my son Toby, there was a really stark difference. With Toby there was music playing, the midwife was there, my husband was there, but it was far more relaxed. There was less concerned expressions, less concern looks on people’s faces. Whereas with Amy it was very, very clinical. There was there was a lot of people in the room. Even I was, I fell into clinical mode, which I’ve done a few times over Amy’s course. I hate myself for it because I’m her mum, I’m not her doctor, but even I fell into clinical mode saying ‘right, where’s the resuscitaire, is it ready? Are the paediatricians here?’ She was placed on my chest and I remember thinking ‘I can’t see her I need to see her’. And she was only there briefly and then she was whisked off. Again. I saw her very briefly before she was taken to NICU. And then I remember being in that room for probably about five or six hours before I was able to go and visit her again on NICU. It was a very, very different atmosphere to my son. When he was born, he was given to me to hold it put him straight to the breast. There were cuddles, there were photos. I don’t have a photo of Amy on my chest when she was born. I have one of Toby. I don’t have one of Amy. The first photo I have of Amy is her in her cot in NICU with lines and CPAP and monitoring. That is the first photo I have of her. I wish I could go back now and tell myself ‘just be be her mum, make your husband take a photo and tell everyone to calm down because everything’s okay’. And she was okay. She was fine during labour, there was no rush to get her out. She was coming out. But she was coming out in her own time, there was no big emergency. There probably didn’t need to be that amount of people. There didn’t need to be any big massive interventions. And I know that’s really hard to predict. And you never know do you, and I’m glad that they were there. But I wish I’d had chance to enjoy that moment of her being born and it wasn’t like that at all. Whereas with Toby I can remember lots more, after the pain, lots more enjoyment and celebration.

Becky Platt: 8:35 Next came a long stay on NICU for Amy, and a period of separation between her and Liz. A feeling of being so close and yet so far away from her new baby.

Liz: 8:47 She was on CPAP for a few days on NICU but didn’t ever need to be intubated. We spent eight weeks on NICU which was just felt that the longest time, absolutely the longest time, and being in the postnatal ward before I was discharged home I think I was in for three days before I went home. They put me in a side room. Everyone that came in that room, the cleaning staff, the people with the meals, the Bounty lady, everybody that came in the room would come in the room and look straight in the cot. But there was nobody in the cot. Because Amy was on NICU. I just wanted to get home and away from that room. Because it was such a reminder, especially being on the ward hearing other people’s babies crying and knowing that she wasn’t with me. And I could go and see her anytime. NICU was on the on the floor above. And I could go up there absolutely any time and go and visit her. And I spent a lot of time at her bedside. But those times when people would walk in the room and just look straight in the cot, and then look at me, and the look on their faces was just horrible. Absolutely horrible. And I remember saying to the midwifery sister on the ward, I just need to get out of this room. And she did say to me, ‘well, it’ll be harder for you to come in and visit when you’re at home’. ‘I know but I can’t bear this feeling any longer of being so close, but not able to be with her’. When when I went home I was, I was on the phone constantly, in the middle of the night, ‘tell me she’s okay’. And they were great. They put up with an awful lot from me. And all day every day, I would come in first thing and was in NICU all day every day sitting with her, not able to do anything for her except change a nappy on occasion, and look after her cares and things, but at least it felt like I was doing something until I could get home and properly feel like she was my baby. And I think that’s something that we don’t always pay so much attention to on NICU, I don’t think we pay so much attention to the parents. It’s so hard being in that position and feeling that disconnect. And I think that will always stay with me, unfortunately. Those early weeks actually were more about Amy being early than having Down syndrome. She had an ASD and a VSD. And she had some trouble feeding. She was tube fed for much of the time that she was in, well all the time that she was in NICU. And we only just managed to get her feeding when we went home because she struggled to start. But all of that time was about her being early, really so so the issues that I was expecting with Down syndrome didn’t come till later on.

Becky Platt: 11:07 Liz had been careful to make sure her family were prepared. When they got home, some of the reaction from other people were quite hard to hear.

Liz: 11:16 People don’t always remember to say congratulations. And that’s really hard. And that’s one of the reasons I wanted to tell people before she was born, that she was going to have Down syndrome so that that wasn’t going to be the focus. When they first met her. When I got Amy home, I remember a conversation with somebody and them saying, ‘well, you know, she’s never going to be a brain surgeon’. How is that relevant to anything? You don’t say that to anybody else’s child do you? That’s not the first thing you come out with, when you talk to anybody else with a new baby. You can never predict who anybody is going to grow into. So why do we try so hard to do that with children with additional needs? I still don’t know what Amy will do when she’s older, and she’s now nearly 15. I don’t know what Toby will do when he’s older. If he has his way it will be as a YouTube star. I don’t think that we predict that much for any other child. So why do we do it for children with additional needs? It’s one thing that will always stand out for me and it just gobsmacks me even now. And I do remember when she was very small, being told by somebody that again very, very well meaning saying there’s no glass ceilings for children with Down syndrome, they can achieve anything, if we do our best for them, we do the right things for them. And again, I think we have to admit that sometimes that’s not true as well, exactly the same as it’s not true for any child sometimes. Every child has their own individual unique potential. And as parents and as clinicians and as a community around that child, we can support them and we can help them to develop to the best of their potential. But that potential is individual.

Becky Platt: 12:41 After those early days on NICU, Liz felt a real need to connect with other parents who had children with Down syndrome.

Liz: 12:48 I had such a curiosity when Amy was little about meeting other people with Down syndrome. And I remember also being in a cafe, I was on maternity leave. Amy was in a prom, we were in the cafe. And I remember seeing another family another table and thinking I think that baby’s got Down Syndrome and just looking and thinking I want to know and I want to speak to them but I daren’t speak to them. And I know that mum looked at me and was doing the same, because later on I met her through this group. And we both looked at each other and said ‘you were in that cafe!’. And if only we’d had the courage to speak to each other at that point. I think that’s what I needed was to reach out and to meet other people. And to make this syndrome a reality. You can read all you like but you need to meet people and get to know people and sharing those experiences with other parents. And it’s not guaranteed you’re going to get on with somebody because you you share the fact that your children both have an extra chromosome at all. And I was very lucky to meet some really, really great people in his early years. So we now still a big support to me now.

Becky Platt: 13:39. Day to day. It’s not always easy for Amy.

Liz: 13:43. There’s a lot of things that she struggles with. She loves to chat to people, absolutely loves interaction with other people. So much so that she has no real awareness of danger or strangers. She will hug absolutely anybody. So I do worry about her when she’s on her own and being independent. She has really poor fine motor skills. She has very weak hands and she also has a fairly poor mobility. She had hip surgery and also had talipes. And so her mobility is not great. She does have a lot of limitations in what she can do physically in the way of self cares.

Becky Platt: 14:18 Liz and her family have very well acquainted with the healthcare system and what it means for people with additional needs.

Liz: 14:25 When Amy was small, she spent so much time in and out of hospital. She had heart surgery. She had hip surgery, she was having treatment for talipes. We were at umpteen different appointments. We’d see physio, we’d see OT, we’d see audiology, ophthalmology, paediatricians, rheumatology, and that’s without all of the HDU and ICU stays. But I think it does make you more aware of the accessibility of health care about the things that work in appointments and things that don’t work in appointments. In ED we’re used to having people sitting in the waiting room for three hours, and anybody goes stir crazy waiting for three hours to be seen. But if you have a child that has dififculty understanding where they are, what’s going on, can’t tolerate the noise ,can’t tolerate the people around them, can’t predict what’s going to happen to them, need some structure, need some routine, have difficulties in hearing and understanding other people, then that all becomes far more important to get right. And so that’s why a lot of the work I’ve done in the past few years has been about trying to explain some of those challenges, and some of the things that we as clinicians can do with it, like I said, it’s not rocket science, but just really simple things that we can do to make a difference. And I hope that that’s changed my practice, as well as those around me. Being a mum, even of a child without any additional needs, but as somebody that’s frequently in the healthcare setting, you do see more of what it’s like from the parent side. The position that you’re in as a mum, or as a dad, or as a carer with a loved one, there. Just the lack of control is just horrible. I’m used to being very in control on a daily basis in my job, a little bit of a control freak. But being a parent and losing all of that control over what’s happening to your loved one is just horrendous. So I hope that having been in that position that’s helped to change the way that I practice, I interact with parents and things as well.

Becky Platt: 16:09 Amy’s brother’s life is quite different, because she’s his sibling. That brings positives and negatives for him.

Liz: 16:16 He has a lot more awareness about difference and disability, I think, than perhaps some of his peers. He’s very aware of Amy and the challenges that she faces. And he’s so supportive to her when, when he needs to be. He’s very, very protective of her as well. And I think that’s made him more protective of some of his peers at school that perhaps have more challenges. The downsides, I think are probably not even things that he recognises mostly because of Amy’s mobility problems, and also because she’s autistic as well. There are certain activities and day trips and things like that, that we avoid, because it is not worth it, it’s too much hard work. So for example, we can’t go to a park at busy times, because if there’s someone else on the swing, we have massive issues, Amy likes to think of the swing as being hers and finds it very difficult to understand that anybody else might want to go on the swing. So we avoid things like that. We’ll avoid active days out because Amy can’t manage them. If we’re going for a family walk, it has to be somewhere that’s on the flat not too far. So there’s so many different experiences that I think he doesn’t get to join in with because we can’t do them as a family. And we do try and do things separately with him. And we’ll take him and a friend to do climbing or something like the climbing wall. But there’s lots of things that we haven’t been able to do as a whole family because of Amy. He has missed out on some of that. That probably isn’t something that he even notices, he may well do as he gets older. But it’s something that I notice when I see him compared to some of his peers, and they’re able to do things that he can’t do. Daft things like the climbing wall or riding a bike. He’s getting more confident with those things, but it’s taken a lot of effort on our part to really give him the opportunities to do them.

Becky Platt: 17:49 Liz has an incredibly positive outlook on life. But she’s also honest about the fact that it’s sometimes really hard.

Liz: 17:58 We as parents, with children with Down syndrome, I don’t think we always are very comfortable acknowledging the bad things as well as the good things. That’s quite important for me to be realistic. There have been some really dark days, particularly early on when Amy was really sick. She had chickenpox pneumonitis. I remember her getting chickenpox and remember seeing the first couple of spots and I thought ‘oh, well, there’s a childhood infection out the way’. Less than a week later,she was being airlifted across the country to Alderhey PICU which was the nearest ICU bed for us that night. I just remember sitting in the parents’ accommodation room over there and thinking, ‘did I do the right thing in having her because her early years have been in and out of hospital, and now she’s going through all of this?’. And I know I absolutely did. She’s enriched my life and the life of those around her a million fold. But when things like that happen, it’s okay to acknowledge that sometimes we have doubts that things aren’t always happy and smiley and wonderful. Sometimes things are really, really hard. That’s important for new parents to know as well, that it’s okay to be sad. Sometimes it’s okay to feel down and it’s okay to think have I done the right thing? Am I doing the right thing.

Becky Platt: 19:02 As parents, we all have hopes and dreams for our children, along with the level of worry about what the future holds. Liz knows that the considerations for Amy are likely to be different.

Liz: 19:13 I think she’s probably going to need a lot of support in her future. Whether that support comes from us as her parents or whether that comes from some kind of sheltered living, I don’t know yet. And we’ll take one step at a time really. I would like her to be happy and to be as independent as possible. But my thoughts about her future have changed a lot as as she’s got older and those difficulties with looking after herself have continued. So she’s got some peers who are a lot more able to look after themselves and I can see them being able to be a lot more independent in their future than than Amy will be, I think. People with Down syndrome with the right support and if they have the right skills can do so much – they can hold down jobs, they can travel independently, get married, and live relatively independent lives. But I’m not sure that Amy will be able to do that. I might be wrong, and I’ll support her to do as much as she can. But I think she’s always going to need a certain level of support. And that I think, has made me think a lot more about my future and what my future looks like. My friends are often very, very well meaning and we’ll talk about…when I whinge about having to clean up after the kids, my current bugbear wiping bottoms. I feel like I’m going to be wiping bottoms forever. My friends will often say, ‘oh, no, it won’t last forever’. And then I think ‘well, it might do’ and am I going to be in my 70s and still supporting someone else? And if I am, then that’s fine. But it does make me think about my future and being a little bit more realistic about things.

Becky Platt: 20:38. Liz is aware that for those looking in on her

Liz: 20:45 I might be completely wrong. I do sometimes wonder what people think. Because I’m so keen to be positive about things and to share the good things that Amy can do and the good things Amy has given me and the good things that she’s given Toby, and the good that she’s given all those around her….sometimes people think I’m coping better than I am. I’m quite good at putting on a game face. Sometimes I just need a life, her positive outlook may lead to some misconceptions breather like anybody else. And sometimes I just need a cry. And sometimes I just need a rant. And sometimes I just need a moment on my own. There are times when I think ‘oh my god Ames. I wish I could just do X Y Z now’, but it doesn’t mean that I want to change who she is, or change the person she is, or change anything about her. But sometimes I’m not always coping as well on the inside as I am on the outside. And I think that’s probably true for an awful lot of us, isn’t it we have a game face. And that’s the face that we show the world. It’s only really by looking beyond that purposefully that we see what is about her. beyond and the things that people might be struggling with.

Becky Platt: 21:43 Thanks for listening. You can find more episodes of Only Human as well as details of events, courses and other resources at DontForgetTheBubbles.com Until next time.