25. A Right to Celebrate – When the Medical Profession Steals the Joy of New Parents – Rachel Mewes

Transcript

Hello and welcome to the if we knew then podcast I’m Stephen Saux

and I’m Lori Saux

and today we’re joined once again by Rachel Mewes from Northumberland, England. Rachel joined us a few months ago on the podcast to discuss her interactions with Twitter and their reluctance to combat hate speech toward people with down syndrome it’s an ongoing problem and is probably a a subject we can revisit but this episode is going to concentrate more on her birth story and the experiences she had during her pregnancy as I said Rachel lives in England with her partner Kirk and her three year old daughter Betsy who has down syndrome she is a contributing editor to making chromosomes count which is the down syndrome community newspaper she has a background in teaching and care for children with special educational needs and disabilities and she’s also worked with adults with disabilities and learning disabilities in the second episode of Rachel we really wanted to share more personal side of things with her has her story for as disturbing as it really is seems to be a common one in our community and I think with her professional background we really get a unique perspective of how parents and specifically how mothers are treated during their pregnancy after receiving a down syndrome diagnosis also in the show notes all have the website for making crimson count and their Twitter page because the work that Rachel’s done with them has most definitely made a positive impact on our community so on to the interview Rachel welcome back it’s a pleasure to have you on the podcast again thank you for having me it’s really good to speak to you so what was your pregnancy like I know you didn’t have that great of an experience with the doctors yes so I didn’t have the the most straightforward pregnancy M. I. coach justicia diabetes at about six months so %HESITATION I ended up having an extra scans to check the growth of the baby %HESITATION I initially refused screening for down syndrome I am so we have screening at twelve weeks in England %HESITATION and I refused that because I know a lot about down syndrome from within with people with the condition for the past twenty yes and I disagree with the legislation that says it’s a serious handicap and should be an ingrown D. for termination so was there a few screening for in hindsight and nobody actually told me that screen and could be used to actually generate new on a pasta with extra stands a few high chance of down syndrome so Dr I’m kind of a bit annoyed about because if somebody had presented the screen into me as a healthcare tool to and ensure the safety of my baby in terms of extra scans and appointments that are perhaps would have screened for down syndrome not to change anything but because it would have meant that she had a mall security M. so anyway I had just eaten by the ease I was having extra stands for that I’m a went to one’s gone and near the end of July having in mind that she was due on the thirtieth of September %HESITATION islands it was an ultrasound and I was that was my point okay and they would do in this gun it was taken ages and then the sono go fast that I’m just gonna have to go get someone else and a Congress street in so she went away brought this to the woman and said to them do you agree with soft and she said yes and then they went out at which point my heart was absolutely pounding I have no idea what was going on and I was looking at ten he was just in a few help you okay so they came back in with the an obstetrician who said that we’re seeing a reduced blood flow through the umbilical cord and you baby stop grow in about two weeks ago and she’s not gotten enough blood so we need to transfer you to the hospital now and that baby will likely be born today distinctly remember saying that baby will likely people on a day by emergency C. section I was seven months pregnant just under seven months yeah it was like six months in two weeks %HESITATION so I was sent to the hospital and they immediately give me injection of steroids to mature the baby’s lungs when do the impression that they were going to operate like that and that because they thought she was about to die and they didn’t just gone and found a double bubble thinking that she had to do it in the freezer so I stayed in the hospital overnight and they give me another steroid injection overnight %HESITATION so I was absolutely like because I had diabetes as well they had given them really close together the injection so much sugars like sky high was really really poorly I got transferred and then got transferred to a specialist hospital in the city and I am where I was transferred to feel medicine unit and they didn’t just gone and confirms that and the was reduced blood flow from the placenta on thought she did have to do in the trees yet I am and they said to me it’s a fatal condition she will need surgery immediately after she’s born otherwise she will die %HESITATION so we need to decide what you can to date so %HESITATION I was a symbol of yes obviously she’s going to have surgery that’s what I want to do %HESITATION and then I was thinking okay so she’s tiny like it she’s going to be really private you are how one is they can operate on a baby that small I am he then the consul and then set also need to let you know that it’s a two in three chance if this baby having down’s syndrome and at that point aha at and for about forty eight hours had gone it was gone like a routine ultrasound at the hospital on the morning of the day before I haven’t slept since then I was full of steroids I’m not just posto so when I came round seven Amanda was still overdosed on steroids and I was hypoglycemic and he said to me do you want an ambulance and she says so we can find out if she has down syndrome and %HESITATION and I said yes in my mind I was thinking she has to have the surgery aged after she’s born like the need to know whether she’s got it on our you know I’m not a doctor %HESITATION I assume that they needed to know so I said yes to an ominous and desist I signed the papers I was under the influence of drugs I was not in my right mind if I had truly understood what risk that what Betty’s life I certainly wouldn’t apart one anyway how the M. Newson desist it was not very pleasant and they put me on a walk by myself and I was admitted to hospital how do you monitor all the time and in case the blocks will start decreasing again and she died I need to be monitored monthly check ups as well so is it a bit by myself a terrible to the women and the other babies %HESITATION I asked if I could speak to someone and to see a counselor I was told no %HESITATION %HESITATION I was basically just kind of laughed so I’d stay it’s already you know the already had it written down that I didn’t screen for down syndrome because I would never have a termination because of my professional knowledge of the condition really %HESITATION I knew more about what life was Johnson was light than the consultants and that’s not all reckons that’s just my career and life experience %HESITATION so %HESITATION three days later the results came back we’ll put in the break room with white walls and a box of tissues on the table control and came in and the results are back and she said it has come back positive for down syndrome %HESITATION and I said right okay what kind of down syndrome I spent twenty one mosaic truncation I’m just kind of fumbled the ball a bit locked inside yet stressed and twenty one I’m not said right okay thanks very much M. and we went to get up to leave and she said oh I just need to stop that and you can still have an abortion and I was just like stoned I honestly didn’t even know what to say %HESITATION but what popped into mind straight away was an image of my baby Diane my very very wanted baby undock image if may have and give this to her dead body has stayed with me for three yes I don’t think it will ever leave me so we would encourage double homosexual distortion hospital one night a week from all the monitoring and all the safeguards to go home and think about whether or not we want to determination so we came home and we sat on the couch and cried because we had oxygen Y. J. R. Y. they were and trying to get us to think about this and went back to the hospital what we had met the autonomy in when we had the state yet again that no we didn’t want to kill a baby I didn’t want them to insert a lethal injection or hawking Kayla and then have to give this to a body %HESITATION and eventually after a thing that was brought the third the fourth time that had stay at that something not I would not date and I did not want to date and finally the put like a plan in place to ensure that you came out healthy this is the same baby that before they got the down syndrome diagnosis that they were explaining to you that when she was born that she would have surgery to fix whatever she needed to happen thank because they always say you know have you gotten name not to yes just call back the after my grandma and so midwife recall in the backseat well let’s have a listen to Bessie talked enough to stay this discussion after I had the diagnosis the first gonna hold off the the consultant didn’t affect her as baby Betsy you’re thirty two as the fetus so she went from being my baby white named after my grandmother it would have been that could have been to welcome into the world to defeat yes after she had a down syndrome diagnosis of the damage that lasted the oxy haba to me that they weren’t seen My Baby as a human being it’s left me with a complete distrust of medical staff and I have to second guess a person looking at we’ve got a really really wonderful pediatrician and and she’s absolutely lovely and she explains everything to the nth degree command a doctoral star like with my life she’s a Mason I am well I mean she must get sick of me ring at some point going like kind of just check this kind of technique because I just I just don’t trust anymore and that’s what’s left me with a hug counseling for post traumatic stress disorder from having to imagine them killing My Baby M. I still have nightmares about the consul and an often dream dot he is killed in my sleep and I wake up screaming and sweaty and I just don’t see how I’m ever gonna get past it I’m so sorry I’m I’m just so sorry that you had to experience that so why am during the maternity voices partnership for the hospital and I’ve been working with the chairwoman that to try and H. kick a bet on the way that they’re treating women and families and it will been gone for Yemen hall we haven’t really made much progress with them and they taught okay this is completely against my rights as a woman my wishes went respected out all %HESITATION they would really cast aside in favor of wall the consul and spell would like it from that perspective well %HESITATION I’d have to say that the changes that you’re making now and the passion that you have to make that change and to make it better for women who come behind you that’s the the good and your daughter Betsy that came out of this ignorance and and fear that caused you to have to go through what you went through that I ain’t dead nobody should have to go through and I and I think that the changes now that you’re making because you know the power of the world the words that are out there and the her furnace and heat furnace you’ve you’ve been on the other side of it you know you’re you’re taking something that is horrible there’s no other word but horrible because this is your time of joy this is your daughter’s birth this is this new life that no matter what challenges you were going to experience with her having to have surgery right after birth this is your daughter and I and I wish I could replace those memories with something’s more joyous and %HESITATION listen and and the celebration that it was and you know when I was talking to Melissa and we were discussing this because I have to tell you just listening to her talk about the great experience she had it made me feel so good because it wasn’t my experience and my experience was nothing compared to what you experienced %HESITATION it it made me hopeful that things have changed and the one thing she said is nobody should be able to rob a mother of the joy of their child yes and that new life nobody that nobody should be able to do that as soon as there is even the faintest crowns that child may have down syndrome the prejudice that so embedded within people’s consciousness like within the medical community it just takes over and then the take away like the personality of your child you you know the time break the bond that you have with you on born child and it’s all you know that this cat this cat that you’re going to sue them for having had a child with down syndrome it is such a dangerous precedent for the unfortunately noninvasive prenatal testing is about to roll out here when I walked into a society that is still so very prejudiced in three S. away from what happened to me is really not that long a time Bustelo into our NHS it is such a dangerous dangerous program but they’re ruled it out I feel like we’re Headin towards Iceland I feel that women aren’t being given the true reality of life with down syndrome nobody when you got it diagnosis nobody sits down and says right okay so you’re not going to be alone in this from day one you’ll have your health visitor that is this in England you have your health visitor and they’ll come to your house as many times as you want to support you you’ll be able to go to these groups in your local area full of the local down syndrome community who are very very supportive and you have a speech and language therapist and a play with her and you have a physical therapist and a pediatrician you have an entire team surrounding your child and you won’t be alone and that that support you and make sure that your child succeed I don’t know of anybody who has had a conversation with medical staff at diagnosis where they have emphasized the sheer amount of support that you got from the NHS and like the social class actor in England because it’s huge and it’s free what information is out there now you just put it out there and %HESITATION and that’s what we need to do is to put the information out there to make our voice be loud and heard and for people to understand and to and to make those changes you know that’s that’s get that information out there that this is this is the reality of the situation and you know if we can’t if we can’t silence the bullies that we can make our voice louder to wear those bullies are silenced because eventually they’re just seen as ignorance and at at some point the conversation needs to change I do I do but I do believe Rachel that there’s there’s there are some changes and I do believe that at that we’re seeing them little by little far too slow as you said and I do believe there’s hope of just you know putting the putting the word out there I would I would ask you %HESITATION as a professional what would you say is the biggest misconception of down syndrome from like the reality when you know when someone sat down and they were going to give you information %HESITATION what is the I guess misconception and false information that gets put out there although it’s a tricky one because there’s just so much %HESITATION I think for me it is D. is people thinking that they are able to predict the future of a baby with down syndrome that they able to host a limit on what that person can achieve and I think these people need to %HESITATION on local Dr Karen Gaffney Dr Sarah Cody I’m Frank Stevens Kathleen Humberstone a minute I could go on the need to local people with down syndrome and the need to challenge their own expectations because by putting a limit on walked the child can achieve M. as an educational professional if you put a limit on it that’s all looking to achieve if you remove that barrier like you would with any of the child you wouldn’t put a limit on what child with forty six chromosomes could achieve then if you remove it and give opportunity then people can fly don’t set limits that’s that’s beautiful they can fly tell tell us a little bit about Betsy yes she is great with you have been in lockdown since March the twenty third which is my birthday incidently %HESITATION she’s shielded because she has because she was born so premature just got a misprint three issues she’s hardly Monia %HESITATION a couple of times and whatnot so we’ve been shielded but I am she’s great she’s coming on so well and just chattering away now %HESITATION sign ins coming on great he’s really good at sign and fish and chips armed chocolate basically junk food she’s really good at Sinema arm just mess enough friends and her family the minister but we all gotten to talk to them on video call M. what else can I say about Betty she’s the she’s just past six is like a cheeky little personality loves kisses and cuddles she’s a little mother hen she likes to look after our dolls %HESITATION she’s got a little kitchen she does help remove hosts with which is a bit weird because like I hate housework but like she notes the washer woman takes the motion now instead which is just amazing %HESITATION it’s really well the future of completing high expectations for woods picked a really really good school and for her to attend and from what I can see the do an inclusion perfectly difficult all the children in school together but they also have an oral nature unit where children with additional needs can come out the classes to acquire environment to do some lessons on the whole school speaks market Tom because we all know that sign in encourages children speech anyway %HESITATION the just off the brilliant so we’re looking forward to getting her start in school she currently attends the amnesty called Sunderland implies who were specialist and early as %HESITATION provision to the only one in Newfoundland which street really lucky to have the Nero stay for around so much %HESITATION but she’s just looks like she’s just interested in Everton and is he from the start of the day at the end so from like five until seven o’clock at night she doesn’t stop which is good but it’s also one tyrant as well as any two year old it’s %HESITATION she’s great she’s changed my life she’s made me into a much stronger person while I was %HESITATION she’s made me ha yes just give me a purpose I don’t know she’s changed about life as well well I’d like everyone to be a well we certainly would love to eat we are looking forward to hearing all the great things he’s gonna do this was something that I was in line to buy when we had a conversation with our physical therapist about the the scans my husband and I did the same thing where we said no we don’t want any of the testing I think that’s because of the fear of what we know that the perception is and what’s out there and what we’re afraid that we’re gonna then have to deal with that stops us because we we had the same experience where we didn’t want any and we’re doing the podcast with our physical therapist Natalie she informed us that %HESITATION as soon as you get a diagnosis you can start putting supports in place and then you know they can they can numb get you connected with what you’re going to need and that like it it was a different angle that we had thought of it was I would say do it yeah let’s let’s see how we’re gonna support if that was the angle of Hey let’s find out now so we can do our very best to support your child right then I think it’s a but I think because we know how heavy handed they are and there’s so much fear even there’s it’s there’s fear in the presentation that you know and because the presentation was always followed for us with you want to do that test now while you still have time to do anything about it and that’s what made us say but no I don’t want anything to do with whatever you’re offering you know %HESITATION problem here you can have an abortion okay until well you could have an abortion if you overdo yeah well gotten pushed the government’s soon to try and push the block but I am this is quite a large great the are trying to push it the other way and say about like it should be legalized opens will press for anything which is the mother of a premature baby who spent like two months in a neonatal unit around babies that were all born premature it’s absolutely horrific you would think that first discuss it as a lot of westerners are about how China does things that we would see that that’s we’re heading that way if you’re if you have these kind of open rules it’s anyway that’s a whole nother we went dark yeah right and in rainbows right I you know it’s so funny because I I I know I I do that I wanna talk about sunshine and rainbows %HESITATION and and I did but it’s not because I wanted I want to put light out there and it’s not because of the ignorance of the dark because I think I know it all I know the darkness that out there and I just rather is enough people actively in darkness out there that I would just like to put some light little corners of light wherever we can so that the truth can shine through and that we can make positive changes in the world because heaven knows that other because you know we know that the darkness is making people who are putting the darkness out there are definitely make making changes in the in the other direction so you know I it’s really hard for me to think of anything but actually rainbows and unicorns when I’m looking at the picture of little Betsy yeah and I and I and I will I want to make a world with rainbows and unicorns for her you know well thank you I appreciate you doing that adjust your information as a professional %HESITATION how it in my NGO and had such a great impact on your life and although that same knowledge was not able to protect you from the ignorance that is still out there or the misinformation that still out there %HESITATION you’re using it you’re using it for the betterment and %HESITATION being able to make changes being able to advocate for your daughter and not only your daughter you have a voice that has a great insight to be able to to advocate for our whole community and it’s it’s a gift and I thank you for that I thank our many Kerrier story with me and I’m so I’m really just so sorry that you had the experience that you had I will say with hope that going forward we can make some changes and and maybe they’ll be one mother who doesn’t experience that yet we need to keep piling on and in every arena in in every form when you keep piling on with advocating for the correct representation of down syndrome I’m getting rid of these antiquated prejudiced views %HESITATION and really just push for acceptance inclusion and equality %HESITATION every single person who don’t syndrome in the world absolutely and you know the one helpful thing I can say is for the most part when I meet anyone I and they meet lamb or they get to know our family any little story that I share because I don’t share these stories not necessarily in my daily life of any of our challenges because honestly the challenges we push through and we really try to keep our focus on the goodness in our life and all the blessings but to my experience %HESITATION whenever I’ve shared a story about our challenges with educating our son or even getting him into a classroom with his peers for the most part people are so taken aback and they they can’t they’re deaf they always ask they say why what I don’t even understand that Laurie why is that situation why do you have to hire a lawyer to to get your son into a classroom and the supports to access you know his protect his curriculum and and reach his potential why is that something you have to do because I don’t have to do it and I think that’s the big question is why but I think that the more people that if they know that it exists then we can make a change together because it is %HESITATION injustice that shouldn’t exist and and and that’s my hope and I’m looking at the whole time we’re worried we’re recording I’m looking at little Betty’s face sage is so adorable she is just she’s adorable and she’s so beautiful and like every child she’s a child with so much hope and potential and her and I think that my goal with this podcast in anything that I can do in my life is to make the assurances that Hey Betsy you’re you you get to reach up ten show just like every other child is it a full undetermined so Anderson that she wants to do %HESITATION will make sure that she gets to do but I’d like a little girl she’s tucked in bed so maybe give a little hug and kiss for us and and we send our our best to you and your family and I really appreciate your time thank you so much for letting me talk to you that’s been really interesting to me is and hopefully we can keep in touch.

yes definitely.

most definitely.

thank you thank you so much.

bye bye.

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