If you haven’t already, do read the first part of Mother Sider Phoebe’s post here. She has written these two brilliant posts for us as part of Deaf Awareness Week 2017.
Back to Phoebe…
I have dated hearing guys in the past and struggled, especially when we were with their friends as they would talk away and I’d have no clue what they were saying and I’d be left out. This caused a few communication issues and, therefore, the relationships didn’t work. The guy has to be willing to adjust for a deaf person to have a successful relationship with a hearing person.
I met my partner properly through friends. He also has hearing loss caused by a genetic condition called Enlarged Vestibular Aqueduct Syndrome (EVAS) which is aggravated by air pressure or head traumas. This condition can also cause bouncing vision as well as complete loss of hearing. When we fell pregnant with our first child we knew there was a good chance that he could be deaf. In fact we were fully prepared for this scenario. There was no option of screening but they kept a close eye on me as the doctors didn’t understand my partner’s condition fully; it was just a case of wait and see. It came as a huge surprise to us that he was completely hearing. We do still have to take him for regular hearing tests however, as my partner’s condition can appear at any time and is only diagnosed with an MRI scan which our son is too young for. For a young child, hearing tests consist of putting sensors on their head and checking neural responses. However, as they get older, they have television screens placed around them and one will light up and make a noise at different levels of sound and their hearing is gauged by whether the child turns and looks at the screen making a sound. We recently had our second child, again fully expecting that maybe he will be deaf and, lo and behold, he could hear too! He, too, will need regular tests to keep monitoring this.
My experience with pregnancy and hospitals was not a pleasant one I have to say. I could never access antenatal classes or pregnancy exercise classes as there wouldn’t have been anyone to interpret what the person was saying and I was terrified of feeling isolated. Contacting the hospital whenever I had problems or questions was like pulling teeth. I couldn’t use the phone and would have to just turn up, to which I’d get the response of, “Why didn’t you phone us first?” They’d also insist on phoning my MUM to tell her my personal medical results from various tests, instead of working with me and maybe emailing me or texting me my results. At least I had a community midwife who understood I needed to be texted not called. Trying to get into the Labour Ward when I had problems was a whole other story. I had to press the buzzer and stand there with a sign saying ‘I am deaf’ so they’d let me in and talk to me face to face…
I really hope that one day hospitals will realise that there are always going to be deaf women having babies and they need to move on from this system to something that works for deaf people. I remember being scared on a Maternity Ward and not wanting to take my cochlear implant off for the fear of not hearing anyone try talk to me. Thankfully my partner was allowed to stay and help me communicate. I was induced with my first son and, when I went into labour I was ignored by the midwives who kept insisting I was not in labour and I was just overreacting. It wasn’t till I vomited in pain and passed out that they listened – my partner had to fight for me to get me moved to Labour Ward from the Maternity Ward. When it came to active labour, I had my partner facing me to interpret what the midwife was saying to me from the bottom end. This helped me a lot and the midwives understood they needed to get me to look at them when speaking or at least make instructions clear to my partner so he could relay to me.
When I had a caesarean section with my second, my partner was allowed to be in the room when they got me ready for the procedure (when they usually send partners out), just so that I felt at ease. Everyone is crowded round you and you have someone putting a needle in your back – imagine not being able to hear any of this and not have anyone help you understand what is exactly going on.
On a more positive note, I loved the Family Nurse partnership. They came to support me when I was pregnant with Elijah and I’m still with them until he turns two, later this year. They were amazing at making contacts in order to get me the support I needed. I never attended HV Clinic visits as my family nurse would come to my home and weigh my boys for me and they were so supportive if I ever needed help with my hearing loss in terms of accessing help. However, with Mum & Baby groups I did feel quite left out. It didn’t help that I was only 19 when I had Elijah, which isolated me more in typical ‘mum groups’; I just never fit in. My local ‘Young Mums’ group was actually the best I’ve attended in comparison to others.
As two deaf parents, having two hearing children has come as a shock to us. We didn’t know how to deal with this
but we’re getting used to it day by day. Many people have asked us how do we hear our children at night? Simple, we have specialist equipment, provided by Action on Hearing Loss, called the Bellman’s System and the Watch and Care System. The Bellman’s System has a pager and a vibrating pad to go under our pillow. The pager also vibrates and tells us what needs our attention – it’s linked to the smoke alarm,
doorbell, phone and baby monitor, which detects when either baby is crying. The Watch and Care System is a camera which flashes when a child moves or makes a sound, this has been very valuable in being able to tell us which child is crying and is a lifeline for us!
Elijah has already learnt a few BSL signs and can let me know if he’s hungry, thirsty or needs a nappy change as well as telling me if someone’s at the door. He’s also learnt some signs of animals and colours and its benefitted us greatly as there’s no frustration when it comes to communication. Fionnlagh will also learn BSL when he gets a bit older.
My top tips for another deaf woman who needs help getting through pregnancy etc would be:
- Make contact with your local Council or a charity to provide you with the systems you need to put in place when you’re around three months pregnant; the earlier the better as it takes a while to get these things processed and put in place.
- Put your foot down and get your Community Midwife to TEXT you when you go for your booking appointment make it absolutely clear she needs to text and make sure you can text her if there are any issues.
- Download the NGT lite app on your phone. This is a text relay app which will be a lifesaver if you need to call the Labour Ward or MLU when the time comes.
- In the early days of adjusting to life with a baby, make sure you take all the help you can get, make sure you also double check your equipment is working before you doze off to sleep!
I’d love to see a change to the way deaf ladies are treated in pregnancy and labour.
- Rather than a buzzer and speak system in Labour Wards or MLUs, why not give those with hearing loss a code they can enter to alert the person at reception that the person at the door is deaf?
- And how about sending test results by text, rather than demanding to call a next of kin about personal medical results.
- Finally, please give us a side room when possible, it’ll be easier for us to hear our babies cry for us and have our partners with us to support us to make us feel safe and reassured.
Recommended organisations and support groups:
(Shockingly, when we asked Phoebe to list any online/FB support groups for deaf mums and dads, she said there weren’t any – in the UK anyway. There are groups for deaf mums with deaf children but seemingly not for deaf mums with hearing babies.)
Phoebe, writing for The Mother Side for DAW 2017 xx