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Pregnancy with a disability

I have produced a podcast as part of my journalism coursework.

I am delighted to have interviewed Ami Hook-Ireland, (Undercover Superhero) on being pregnant with a disability. Please click the link below to listen👇

 

 

I have tried to make it accessible and inclusive to all, so have included a transcript below:

Audio transcript for the podcast between Hannah Deakin and Ami Hook-Ireland, Pregnancy with a disability

Piano music

Hannah: Welcome to my podcast! My name Hannah Deakin. Today we are speaking to the lovely Ami Hook-Ireland. Ami is a wheelchair user due to Sensory Ataxia, has hearing loss and a vision impairment. She is an expecting her first baby and today we are going to be speaking to Ami about being disabled and pregnant.

So welcome Ami, it is great to have you.

So my first question is: How many weeks pregnant are you?

Ami: I am 27 weeks pregnant.

Hannah: Gosh! I can’t believe it is 27 weeks already.

How have you found being pregnant?

Ami: I really struggled in the first trimester, mainly due to fatigue and anxiety. Having already experienced fatigue from my conditions, I thought pregnancy fatigue wouldn’t be as bad – but I was wrong, so very wrong! Pregnancy fatigue is in a league of its own!

I’ve found the second trimester more enjoyable, from watching my bump grow to feeling our baby girl move. It really is a special journey and I’m treasuring each moment.

Hannah: Aww that must have been amazing to feel you baby girl move. Especially the first time.

Did you suffer from morning sickness?

Ami: I felt nauseous for quite a few weeks during the early stages. I’ve only been sick once but I’m not sure if that was due to me being wound up or the fact that I had eaten too many BBQ Pringles. I craved them so much but after being sick, I don’t think I could eat them again! 

Hannah: Has being pregnant impacted your disability and health?

Ami: I really thought being pregnant would make managing my disabilities a lot more difficult, but it hasn’t. Although, I am expecting it to impact my mobility as my bump gets bigger. Due to my Sensory Ataxia, I need to see my feet when I transfer and walk. Thankfully, I have a Ross Return, which is a standing aid, to help me transfer safely. Another positive has been my blood test results, since being pregnant they have come back all normal, which hasn’t happened in a very long time!

Hannah: That is great you blood test results have been good.

What have other people’s reactions been to you being pregnant ie friends, doctors, strangers etc?

Ami: The majority of our family and friends are really happy for us, however there have been a few mixed reactions. The one question that has cropped up the most is “How will Ami manage?” the reason I say that it has hurt me is because Ewan and I have sought advice from medical professionals, disabled parents, and organisations such as Enabled2Parent. We made sure that we had all the information and advice that we could possibly gather. So, having others question my ability to cope has made me feel like they think that we are irresponsible and not thinking this through.

I’ve not had any negative reactions from medical professionals. So far, they have all treated me like any other mum-to-be. Also, there has been one advantage to lockdown and that has been I’ve had no strangers come up to me and ask questions.

Hannah: I am glad the medical professionals have been positive. Yeah that true, yeah I suppose you not going out with lockdown then you have not seen people so much, especially people that don’t really know you but might ask those questions that maybe they shouldn’t but think that they have the right to knowing the answer to.

Is there anything you wish the general public knew about being disabled and pregnant?

Ami: I wish society would accept that disabled people can be pregnant, and be amazing parents, just like any other parent without a disability. I know there will be challenges along the way, for example, I know I will struggle with changing a nappy due to my poor fine motor skills and I will struggle to hold our baby for long periods due to my muscle weakness. But there are so many ways to overcome them, and it will take me a little longer to adapt and learn how to do certain things. Its really no different to any other first-time parents, we all have to learn everything, albeit different ways.

Hannah: That is so true Ami, I have not really thought about it like that, but I really like that. Also, I think as disabled people we are used to adapting, constantly. I always say that we are really good at like jobs and things, because we are constantly having to overcome hurdles and work out a way that we can succeed and I think this is a positive attribution to disabled people in general.

Have you thought about whether there is any gadgets or equipment that will help you with the baby?

Ami: I mentioned Enabled2Parent earlier, which is an organisation that provides both disabled parents and medical professionals with practical advice on parenting, all aspects of raising a child and offers support. We have been given advice about the different types of gadgets and equipment which can be bought online. We have bought a carrier, and a sling which will help massively when holding our baby, both at home and outside. I did consider an electric height-adjustable crib, however our house is quite small and I’m not independent upstairs due to my wheelchair being wide. So I wouldn’t benefit from the adapted crib, which led us to choosing against this. 

It's reassuring to know there is a variety of equipment that is easy to access, if needed.

Hannah: I have not heard of Enabled2Parent. But it’s really good that there are organisations like that out there to support you.

Ami sitting in her garden, in her wheelchair cradling her bump, she is smiling at the camera.
Ami, sitting in her garden cradling her bump

 

Hannah: Do you think adequate support has been offered/ given to you at the hospital?

Ami: Yes and no. Our midwife has been brilliant, I was apprehensive when we first met her though, she had never heard of some of my conditions, and I was worried that my needs would be too complex. However, as she has gotten to know me a bit better over time, she always ensures that I fully understand any advice or information that is given and is always finding additional resources that may help us.

On the other hand, due to the experience we had at 13 weeks, we were left feeling like we were on our own, scared and not knowing what to do next. We had our first scan on the 11th of May, we found out that I was 13 weeks along and baby was healthy and quite active. It was a special day for us seeing our baby for the first time – we were over the moon.

Then just 2 days after our scan, before going to bed, we discovered blood, and a lot of it. Our hearts sank and I couldn’t stop crying. Ewan phoned Medicom, which is a helpline, and he was advised that as I wasn’t experiencing any pain with the bleeding, then just to wait until morning. Ewan climbed into bed, trying his best to comfort me and I said, “I’m not going to just lay here and worry myself sick that we could be losing our baby."

We got to A&E just before midnight. We eventually were seen around 2am, and with hardly any sleep, the night just continued to get worse and worse. Ewan explained to the nurse about the bleeding, and routine questions were asked. Bloods were taken and another nurse fitted a cannula in my hand. She became very impatient with me, as I was trying to breathe deeply to prevent myself from passing out and she kept clapping her hands and waving directly in front of my face.

She then wanted me to do a urine sample, now bear in mind that I’m exhausted from the lack of sleep, I’ve just had 5 samples of blood taken, I felt very shaky and I’ve never walked with my frame whilst having a cannula in my hand (and I need both hands to use my frame). On top of that, when we turned to leave the room, we realised the door had been open the entire time so we had no privacy whatsoever. Ewan had to explain 5 times to the nurse that I was unable to walk with a cannula in my hand. How we kept calm, I don’t know.

Another 2 hours went by, we were called back in. Again, more routine questions were asked and then there were some which were completely irrelevant like, “How long have you been in a wheelchair?” I mean, what has that got to do with what is currently happening?

The nurse told us that my bloods were normal and he wasn’t sure what to do next. He finally decided to ring the maternity ward and we were told that we would have a scan. We got to the maternity ward. Ewan helped me transfer onto the bed and went to find the toilet. A doctor came in and started speaking to me, I could tell because his mask was moving. I said to him, “I have hearing difficulties so you will need to wait until my husband is back so that he can relay what your saying." The doctor then walked around the room and when Ewan returned, he heard the doctor still trying to talk to me.

Thankfully, my cervix was still closed, we were then told we couldn’t have a scan. Even though there was a scan machine right beside the bed I was on. We questioned why, to be met with “The earliest scan we can do is in 2 weeks. You can go home now" and he left the room.

Ewan and I just looked at each other in disbelief, we were left with more questions than answers. We left the hospital around 6am. Those 6 hours had left us feeling neglected, and the lack of empathy was unbelievably shocking. We are dreading when the time comes for me to stay in – honestly, I’m more anxious about the standard of care on the ward than giving birth!

Hannah: Aww I am so sorry that you have had to go through such an awful experience. I have my fingers crossed for you that it is much better when you give birth to your baby girl.

Have you been able to access everything that an able -bodied mother-to- be has been able to/needed to access?

Ami: Absolutely – although shopping for our baby hasn’t been as accessible due to the lockdown. I’m happy to shop online, and often do so as its more convenient, but I’ve missed the in-store experience and getting the chance to see baby products before deciding whether to buy them or not.

Hannah: Lots of difficult decisions, deciding which one you want to buy, it can be difficult just looking at the internet and not seeing it.

Is there anything you are worried about either during your pregnancy or when your baby girl is born?

Ami: I am a little worried about how limited my mobility will become during the last few weeks of pregnancy. But as I have expected it and have plans in place if it does become limited, then I’m not overly worried about it. I’m worried, that when she is born, that I will be too hard on myself if I don’t get the hang of something straight away – like changing a nappy, I’ve never changed one even before I became disabled, so everything will be a huge learning curve for me.

I’m also worried about the comments that may be directed towards Ewan and myself – I’m hoping we don’t receive any negative comments. Like I said earlier, disabled people can be great parents just like any other parent without disabilities. 

Hannah: Aww I think you will both be amazing parents. I think it is the love and care that counts the most, which you both clearly have, I can hear it in the way you talk.

I am delighted to have spoken with you, Ami today. I think you have given us a fabulous insight into being pregnant with a disability and think this will be very useful for other pregnant mothers.

I am very grateful to Ami for giving up her time to speak to me and I would like to wish her and her husband, Ewan every happiness with their baby girl.

Thank you

Piano music -end

 

Hannah x


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