Sharing my experiences with student midwives
20 January 2021 | Tamsin Kingsley
Hi, I’m Tamsin, and I’m really excited to be able to share some of my family’s story with you this morning. I live with my husband Dan, and our two girls, Lauren and Izzy. Lauren is 5, and Izzy is nearly 4. Lauren is super crafty, loves colouring and all things unicorn and princess. Izzy most loves dancing, being outside, jumping in puddles and playing on the swings, she also happens to have Down Syndrome. Although her personality, likes and dislikes etc. are what make her who she is, the DS was the first thing I found out about her, which makes it harder to not let that define her. It’s also the first thing people notice about her. But anyone who takes the time to get to know her will realise there’s far more to her (and every other person with DS), than a simple diagnosis.
I first found out that Izzy probably had Down Syndrome a few hours after she was born, but I’ll start by talking briefly about my pregnancies. In both my pregnancies I was asked by the community midwife whether I wanted screening for DS. I think I was given a leaflet to read before deciding, but the midwife herself offered no further information on DS or the reasons you may want to screen. I mistakenly thought that the only reason to screen would be because you would wish to terminate the pregnancy if the baby had Down Syndrome. This is something I wouldn’t do and so I refused screening both times. Had it been explained to me that a child with DS can have health issues that it might be useful to learn about ahead of time and to prepare for, I may have answered differently. If you go on to work in the community, it is worth thinking about how you ask the screening question and what explanation you offer for why it is offered.
Anyway, my first pregnancy and birth were very straightforward, which is probably why I thought it was a good idea to get pregnant again 10 months later! In my 2nd pregnancy I was diagnosed with polyhydramnios with no obvious reason. I was told it was probably just ‘one of those things’ and although DS was on the list of possible reasons, I was only 27 and didn’t really think too hard about that possibility, seeing it as quite unlikely. I went into labour 2 days after my due date and was surprised by the speed at which things progressed. By the time I made it to MAC I wanted to push. They ran me along the corridor backwards in a wheelchair to a delivery room, where I delivered less than 2 minutes later. Izzy never let out a big cry but they did manage to help her to start breathing. Her breathing sounded noisy and they said it was likely due to the speed of delivery. My husband enjoyed cuddles while I was stitched up, and then I wanted to feed her. I had breastfed my first daughter for 13 months and was keen to get started again. However, after a few sucks she struggled and had a colour change, at which point she was taken from my arms at great speed. That was the last I saw of her for quite a few hours.
Eventually a registrar came and crouched down next to my bed. She explained that they thought Izzy may have something wrong with her heart which was affecting her breathing, and that she also had soft facial features that made them think she might have a genetic disorder…. Then she paused…’like Down Syndrome?’ I asked, and she confirmed that it was likely. Believe me when I say every parent will remember how this news was delivered to them. For me it wasn’t delivered or received as bad news, and I was horrified to later find out some other peoples experiences. I follow a lady’s blog on facebook who has 3 children, the eldest of whom has DS, and she named it ‘Don’t be sorry’, after the doctor who told her Oscar’s diagnosis started the sentence with ‘I’m sorry’. There is nothing to be sorry for, and I was saddened recently to hear that one of the ladies I am supporting through S&S was given the news in the same way just 4 months ago. You say ‘I’m sorry’ when someone has died or been diagnosed with a life limiting condition. Not because someone has an extra chromosome.
After Izzy was born she spent 2 months on the neonatal ward, struggling with her breathing and feeding. I was determined to breastfeed, and many parents of children with DS do breastfeed, but in the end it wasn’t safe for Izzy as she was aspirating fluid into her lungs, and she came home fully tube fed. After just three months at home she was admitted again for her breathing, and we were in and out of hospital all of that first winter of her life. It was hard.
She was not a healthy baby. But she was a loved baby. I’m sure you’ve all heard people say things like ‘I don’t mind if it’s a boy or a girl, as long as they’re healthy’. I struggle with this as what i hear is ‘I don’t mind what I have as long as it’s not like your baby’. My baby was not healthy, but she brought just as much joy and light into this world as my first baby, as any other baby. Though no one told me they were sorry when she was born, everyone in the room had sombre faces, and the way everyone spoke to me was like someone in mourning. I wasn’t mourning. I was terrified for the life of my baby, I was consumed by worry, but I was still full of joy at seeing my little girl. For this reason I gave her the middle name Joy, to try and help others to see her as I did. She wasn’t healthy, but she was loved. As midwives you can’t make sure everyone has a healthy baby, but you can support and help them through their pregnancy, birth and beyond; whatever that looks like for them. Every baby is precious, regardless of genetic condition or health issues.
One of the best things that happened not long after Izzy was born was a midwife coming to speak to me. She told me all about her son with Down Syndrome, what he was like and what he had achieved. I was still in shock and I don’t remember any of it, but I do remember how clear it was how much she loved her son, how proud of him she was and how keen she was to show me that life with a child with Down Syndrome in it is a fantastic life. And she was right. At Sunshine and Smiles we would love to speak to anyone pre or postnatally with a diagnosis of Down Syndrome, and whilst in Leeds you are always welcome to refer to us. The Down Syndrome Association has details of other support groups nationally.
Izzy had a really tough first year in and out of hospital. People with DS tend to have lower tone- Izzy had really low tone. Her ‘floppy airway’ meant that she couldn’t keep her airway open enough when asleep, and her oxygen levels would drop dramatically when she slept or was upset. I found it very stressful every time she started crying, knowing that if I couldn’t calm her down in time it could be a trip to A&E. When she first came home we couldn’t really drive anywhere unless there was someone else to sit with her in the back, keep her calm and watch her colour. During that first year she had 6 hospital admissions to the paediatric wards, including 3 ambulance trips straight to resus. I didn’t like to leave her in hospital and so barely left the ward myself during these times, living for my visits from my husband or mum and little Lauren, who had just turned 2. There were negative impacts on my mental health, and the lowest point was when she crashed aged 10 months and stopped breathing. Thankfully we were on the respiratory ward, but due to be discharged the next day. She was intubated and taken to ICU, and thankfully that kick started the process of actually sorting out what was wrong. She had surgery for her severe reflux, which combined with her aspiration was what caused her to crash. She was also put on NIV at night, which I’ll explain a bit more in a minute. These two things meant that she could finally live a normal life at home, and I could live free of the crippling fear of a quick deterioration of her breathing leading to a 999 call or worse. Of course, it took me a long time to believe she really was ‘fixed’, but here we are nearly three years later and she hasn’t had a single hospital admission since her first birthday.
Attitudes toward Izzy and her DS diagnosis were generally good, but both in the hospital and the community I felt there was a leaning towards making certain assumptions about what progress Izzy would or wouldn’t make because of her DS. On the neonatal and paediatric wards we were told several times told that the only way to fix her breathing would be a tracheostomy. I fought this decision and she has remained healthy by using NIV or Bipap at night instead. This is a mask she wears while sleeping connected to a ventilator which provides air pressure, keeping her airways open. She was tube fed for her first year of life, and our first speech and language therapist told me she would probably always be tube fed because of her complex needs combined with her Down Syndrome. She still has a gastrostomy but it is now only used for medications and small amounts of water, she eats and drinks normally.
She spent about 6 months in hospital in total- several healthcare professionals told us that children basically do not develop new skills while in hospital, and she would be more delayed because of her stays. I disagree. Physically she was later than her typically developing peers but is now running around with the rest of them. She is potty trained, sociable and very happy in a preschool nursery. Speech has been slow but she is now saying lots of words which are gradually getting clearer, despite the paediatrician telling me about a year ago that she may not ever talk. Basically I feel that time and time again she has been written off somewhat due to her diagnosis. Less is expected of her. Assumptions are made of what she will and won’t be able to do and achieve.
As you come in time to work with those who receive either a pre or post-natal diagnosis of Down Syndrome, I ask that you remember our children. Remember that they have an amazing quality of life and long life expectancy. Remember how happy they are, and how much they love and are loved by their siblings. Don’t feel sorry for these parents, but simply be there for them to offer balanced information and support. Yes, a child with Down Syndrome will change your life, but really, doesn’t every child? My two both come with HUGE challenges, but as you can see here, their relationship is just amazing. They really are best friends and I know that Lauren wouldn’t change a single thing about Izzy, and nor would I.
I am a 33 year old living in Leeds with my husband and two children. I am a full time mum and carer to Lauren, 7 years and typical, and Izzy, 5 years with Down's Syndrome. Izzy has complex health needs mostly due to her low muscle tone, and struggles with feeding and breathing, resulting in tons of appointments and hospital admissions. Both children are happy and full of life, and our family all love each other very much.
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