53. Discussing Infertility and a Down Syndrome Diagnosis with Natalie Spiteri

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 by a good friend Natalie Spiteri.

We are honored to have her here with us sharing her story a very personal journey and a conversation that we don’t have very often but it’s through sharing our stories that we can connect to each other and left each other and change the narrative Natalie thank you for joining us on the podcast I will give you I thank you for having me back again to chat well we really appreciate you being here tonight for this conversation because it’s something that we tapped on a little bit when we were talking and your physical therapy episode and I just I think it’s a really important conversation to have yes you want to re introduce yourself and say a little bit about yourself sure so my name is Natalie Spiteri Emma pediatric physical therapists and I’ve been a P. T. since two thousand nine and I’ve been working with pediatric patients since two thousand ten and I believe I met you guys in two thousand eleven I want to say %HESITATION maybe late two thousand ten and he was having trouble rolling over yeah yeah right Liam was my first pediatric patient so you guys are always stick in my memory you’re my first pediatric patients when I switched over to pediatrics well and I am so sisterly doing early intervention I’ve been now I now I do and I’m a school physical therapy it’s been doing that since two thousand and fourteen and I’m still doing that today and I spoke to you guys about a also %HESITATION dealt with infertility and that’s when I came out that my first pregnancy which was their fertility treatments that baby had down’s syndrome so I’ll talk to you guys about that experience and everything else after that this is of a very personal conversation but I believe it’s it’s really important because I think it affects so many people and I don’t think it’s a conversation we have we were talking about IVF and other fertility treatments as well and then there’s the conversation you can give us personal information about when you receive the diagnosis you know because he unlike a lot of parents when you receive that diagnosis and you’re coming from level playing field and you don’t know is that right it’s not a level playing field is is unlevel playing field because you don’t have the information going into it so you can get wobbly with the diagnosis because there’s so much that happens in that moment but you already had experience with down syndrome and and so you can you know you can share with us wherever you want to start so whatever whatever you want to start with to talk about it we’ll start there okay so sure so %HESITATION so first my husband’s a pediatric occupational therapist so we both come from that Pete’s background of working with children special needs and so %HESITATION we started the fertility treatments and before you going to IVF most people do something called I. U. Y. which is like intrauterine insemination by artificial insemination is what used to be called and then usually you try a few of those and if those don’t work then you go on to IVS %HESITATION so the second we did two of those and the second one I became pregnant and you know when you do it through a fertility doctor them test your numbers early on and my numbers were super high and before we do anything we just knew I was pregnant and you know so high that was like is this triplets like or what is this and %HESITATION later on I came to learn that if you’re pregnant with a child with down syndrome you can have artificially high numbers but no people really know that because it’s only you only know if you were doing fertility treatments how higher numbers were initially %HESITATION so that was one thing that I thought I would look back on but anyway so we were so excited because we had been obviously trying for error free over a year and this was through fertility treatments and I was just so excited like oh god I don’t have to pay twenty thousand dollars for IBS we got you know are you eyes are only about fifteen hundred dollars versus twenty five thousand dollars what is the difference between I. V. I. N. I. V. F. so I you I is just the insemination where they you know they take this firm and they put it into your uterus and you hope that in a fertilizes and it’s time to with ovulation you take medication you tie it you take a trigger shot they call it that makes you ovulate at the exact moment that the doctor needs you to when they put the sperm in there so it’s all very at times and then you just hope that your uterus works in your V. eight catch an athlete that you get pregnant people that have like quintuplets Sir you know quads those people usually get pregnant through this method and because you’re taking drugs to help you release eight enables people released a lot of things and usually the doctor will not do the process if they see too many aches so those people that have that they have a lot of aids the doctor you know just did anyway and you know they got a ton of kids they can see how many eggs drop they can tell ya they can tell that’s it I didn’t know that I didn’t I don’t know anything about this process yeah I’m very I’m if you want I can do a whole IBM session but am you go in and there is if you’re not familiar with it if you go through fertility treatments you get a transvaginal ultrasound almost every other day which is the one up here you know gradually area and they can see the the call follicles the eggs growing and they know when they hit a certain size that they’re ready to drop me and then a time at all and then you take a shot that on that could convert your hormones to make them drop so that’s how they do it so we did that and then we found out we were pregnant and we were excited and the numbers were high and rising wells we wear when you go to visually treatments you get to do what else just found at six weeks and then at six weeks we saw the heart beat and there’s only one so as I go good triplets and yes ma’am so we saw one and we were excited and then because you’re going this is only the fertility doctor initially you don’t see the O. B. you go every other week and you get to check you get lots of older sounds compared to somebody who did it naturally so %HESITATION everything was good and then in our ten week or sound he got concerned and he said %HESITATION I guess I think you probably hear this now but the new cool the new coal mining that and the next you know he’s like it looks very big to me and I’m concerned but he didn’t say down syndrome his second concern there’s an abnormality and %HESITATION for me because I’m used to it you know we learn about imaging and teaching school and I would imagine I’m like I don’t really look at emerging too much and you just you know if you think it’s down syndrome and what I would need to see the Gen X. not gonna freak out about an image did they say down syndrome at that point %HESITATION yes that’s what they were getting that that’s what they guess because that’s the basic that’s like the main reason they do that test a say it’s thank is usually down syndrome I guess and so he recommended I was ten weeks and he recommended I am go do the blood tests that they do now at ten weeks where you can do that you can check the chromosomes and the gender and ten weeks and I am so I went and we did it and then it was mother’s day that weekend coincidently so we went around and say you know still like hopeful everything’s gonna be fine and then like two days after mother’s day I was now eleven weeks and I thought it would take two weeks to get the results so I wasn’t expecting a phone call but my fertility doctor I’m called me very panicked he was like I need to tell you the results on the baby you know has a ninety nine percent ninety nine percent chance of having down syndrome and I wanted to tell you before that %HESITATION the genetic doctor told you and he told me only a first because he called me and so I had to call Kevin Intel has a cabinet to go tell him the news it within that same phone call he was like if you wanna he like what about all right away is like if you want to abort you know we need to talk about this soon because you know I was already eleven weeks can you see what to do and I was like oh god all that well I don’t even know what to say right now and I’m like okay well let me know anything I’m so sorry this happened and %HESITATION let me know you decide to do %HESITATION and then he’s like I’m gonna rush you to get a detailed ultrasound yes I guess there’s opposite they do detailed like high level older sounds to see if you don’t confirm more visually if the baby has the markers for down syndrome so I was like okay and so that was scheduled for the next day the day after we found out and so %HESITATION that date you know because Kevin I am we work at different school so we kind of we cut off work early and because they called me in the afternoon so we talked in the car and Leslie because we didn’t know like you know I won’t say what Kevin starts work as yet we came from different perspectives but we’re both like crushed thinking I think both initially crush it’s because like I know a lot of my families with down syndrome you know at night you know with children with down syndrome you know even on the phone the doctor was like you know there’s these kids you know kiddos with dell %HESITATION pregnancies with down syndrome have a seventy five percent chance of miscarrying so that was a part of his reason for you know asking if I wanted to abort already so and you know that mean conversation I had with Kevin is like you know I thought of you guys immediately because I told you initially we were thinking of naming the first baby you’re really %HESITATION if it was a boy because I know have you know Liam is you know very special to me and I love that name and so I was like I just can’t in my head I was like I can’t think I can’t imagine a boarding today picture somebody likely I’m not existing you know and has so many patients with down syndrome I think I just can’t imagine you know them just not being here you know from a choice and to not be here and you know Kevin understood that and %HESITATION which I talked about you know I only families you know the ending it doesn’t seem like it’s something that’s impossible obviously because I know some ways obviously everybody’s living in and you know obviously raising a child with down syndrome so it was just so %HESITATION used your wheel starts spinning and for me I was thinking about families like yourselves were annually and you know shortly after birth and then now that I’m in the school system I think about the kids with down syndrome who were in high school and I think about like okay you know because I can kind of get an idea but I know what they’re like but their life is gonna be like when their babies and toddlers and school age and I know what life might be like at high school and then my mind go through everything and then I went to the TV show the one M. you know what the adults with down syndrome the name is escaping me born this way born this way yeah I think about that too late and I was like well you know it’s just I can’t imagine making a decision to end a life that obviously it’s a life worth living and happening and %HESITATION that whole day we were just mostly crying thinking you know that all the stocks or in your head in that you know it’s already suggesting to abort and then you know we we told a lot of family and of course I told them that the baby had down’s syndrome and %HESITATION and they were just my parents are %HESITATION you know the the the come from just anybody that doesn’t anything about diagnoses they were just you know feeling like and that there was something wrong with the baby they you know they were worried about that and so that night I’ll be sales I’m not gonna make a decision I was like I’m gonna go into this ultrasound let’s see what’s going on like in my head I was thinking you know if everything looks healthy and it’s just great I I feel like I’m going to need more time to decide like I can’t just make a decision this fast and so that’s kind of where we left it and then %HESITATION the next day we went and %HESITATION it was the day sticks in my head because like we’re in that first of all I’m infertile right so I mean we do with a bunch of pregnant women and on top of it I have I know that this baby has down syndrome people are asking if they support this baby is a very hard waiting and then we did the ultrasound and it was the ultrasound tech and because again I know how to read images it was on a giant TV and it was just laying there so I already knew that something is wrong and it is under and people don’t see that often but like a dead baby our ultrasound it was just like really bad to see it and %HESITATION and then they did the Herbie and I the doctor did not talk and he just %HESITATION you know there was no it was like you know the line across and and in my head I’m like a I I don’t know what to say it is you know you you think obviously on one hand %HESITATION something was obviously wrong with the baby and not the down syndrome part but something wrong enough that it couldn’t even survive past eleven weeks and then in just thinking like you know how to why did this happen to me you know and and then the doctor was %HESITATION he’s like I’m sorry %HESITATION I’m sorry that you spend this much money to get to this point and this happened that’s what you said because he knew we were for you we referred from it infertility Dr is he he didn’t know how we operate the only thing I kept thinking was like at least I I didn’t make a decision about this you know it kind of happened to me but it was it was just so hard knowing that you know again something you know with infertility you have no control and then hear something again you have no control it just kind of ended and then %HESITATION and then they recommended an immediate %HESITATION DNC because I was eleven weeks into the world and so two days later I have a DNC and then they told me they wanted to double check the tissues to make sure it had down syndrome I was like another check like we need to make sure it has down syndrome and it like oh god okay well let me why why do they want to do that I guess just to confirm I don’t I don’t know they they tested and I didn’t really give me a choice they just said we’re gonna test the tissues and so I said okay I guess test the tissues maybe to confirm I guess on the fertility side was it something that I had caught innocent like something in my uterus that because whatever to happen or was it genetic reasons that it passed away so and then the other confirmed hundred percent that it had down syndrome and he knew the gender but we decided not to know the genders was too painful it’s just too hard to even out of you when you see it lying there dead it’s like us to give it like then you can do more of the future so it’s like I only want to just like go in my head I think it was a boy imagine it being a boy %HESITATION but we don’t know so then after all that what does it tell you guys is the main thing that people told me for like all well you know it’s a blessing you know that it happened because the baby had down’s syndrome so you’re okay you know and that was the hardest thing was like you know only one way I can get pregnant normally so you know I would I would have liked to keep the pregnancy and B. it’s like hard hearing that knowing I have so many families raising kids with down syndrome and then saying like well you know you’re better off this way you know it was meant to happen that way and so and that’s that’s all I heard after because I was very open I didn’t say like I’m not may hide and I would say you know we lost maybe had down syndrome and the reason he passed away it was was a lot of swelling so whatever happened a lot of swelling around the brain yeah that’s mostly what they told me so and then after that you know I just couldn’t let it go like I couldn’t %HESITATION I couldn’t let go of the the thought you know you you picture like even if you had to be with us when you picture their future and I just kept picturing it looked weird because I picture the future of raising a child with down syndrome versus raising a child not like down syndrome which is very weird to think that way and I am I started following accounts on Instagram of people who are raising children Johnson %HESITATION I’m just I’m drawn to it because it was kind of I feel like for me it was imagining a life I would have had had it you know had that kid with down syndrome so %HESITATION that’s how I went from there and then that we did two more intense and that intrauterine insemination so my head even though I have this pregnancy with down syndrome I wasn’t scared to try again to see because you you know that you still don’t know what the kiddo can have a genetic issue or not but I didn’t get pregnant until I had to do IT apps and then doing live yes they’re like you need to do the genetic testing if you are a high risk because you had a pregnancy with down syndrome so it’s like in your face again about do the genetic testing and I thought about you ari how your doctor did it without asking you the genetic testing and %HESITATION but for us we did it because in the end the genetic testing is not just for down syndrome is just to look at you know if you know any cycle you don’t get pregnant you know it’s can be random issues random issues with the eggs so that’s the reason they test because it costs so much money to do the procedures that you don’t want to risk putting in an age that has a lot of abnormalities versus one that you know has no genetic issues and for me I was just scared to you know go to a pregnancy get that far again and and and something to be wrong that happens again so it was just it was it was hard in every time you do this if you go to United counseling so you hear the genetic counseling about all that the interior they ask us if we want to take more blood tests to find out if anything else is wrong with mass like Karen and I had to take a lot of blood tests to see if we had any chromosome issues somewhere along the way and then this just in your face a lot and then %HESITATION I mean infertility groups on Facebook and it’s it’s like the number one question they say do I do genetic testing you know do I do it or do I not do it and you know a lot of people you know talk about down syndrome and also the lethal the lethal beauticians that child can have that you miss Kerry so it’s a common discussion and then I’m sure you’re always using the come discussions about how genetic testing is maybe leading to less children with down syndrome because a lot of people are doing the ten week task in deciding to abort and so I was always in my head all that and then even when I got pregnant so Linden why is that Lou I did a lot of fertility tricks but Linden was from the second round of IVF I did the first round spent twenty five thousand dollars on the first round we tested the aegs %HESITATION I got pregnant but miscarried and they don’t know why and then the next pregnancy %HESITATION next and the color transfer and this is when they already put a fertilized embryo inside me and %HESITATION that didn’t stake in so I left that doctor the doctor that you know asked if I wanted to abort right away I did the idea of with him but after everything was done I was like nope I’m done with you I’m like moving on from this I cannot you know too many memories and issues with you so on I went to a new doctor and I did the IDF said everything with the new doctor and then when I got pregnant with Landon they still recommended genetic testing even though she was already attested embryo and so we had to go in again to the genetic counselor and %HESITATION I felt that feeling again like I feel like I couldn’t breathe knowing one is something gonna happen or be is something wrong again you know you know obviously every you know genetically he was you know nothing happened everything and they’re being fine but you’re even actually to the hand esto it’s always in the back of your head like you know if you can happen it can happen again and before all this I did not even tell me if that’s a false number I didn’t know pregnancy the down syndrome miscarried is in my head I’m like I have so many patients with down syndrome it’s I feel like it and they always find I didn’t know that it was a thing I just have to think that how would they have that data you know how many I mean of the miscarriages in in the country at all to do in the country how many get a genetic test after I mean that that there’s a lot of miscarriages that you wouldn’t do that as it is known you said that the doctor said that it almost felt like it was the doctor saying you know it’s like this is one of the risks this is the heart break you could have because when you when you tell your story you’re the only one that is even teeter tottering at all of of yeah the decision of course should the woman you’re making the decision but it didn’t seem like you’ve described anybody around you that was nobody was saying here’s down syndrome and what it really urgency of the first phone call of I need to tell you now before someone else does it feel like I feel like that’s that’s the main you experienced that that’s how they give you news even after child’s been born I mean that’s that’s that fear and misinformation that that they have did you ever talk to the first doctor about the way about his attitude or the way he was present because and also I always think of the mom who is pregnant and that’s a lot and to have use to to create stress and a pregnant woman is so unfair to create that stress and worry no I didn’t talk to him about it %HESITATION because I think it’s just such a whirlwind and then we were still stuck in that mode of what we still want to get pregnant and then %HESITATION I did get irritated with him after the idea after we did IBS and that’s why I was just but I never I think he would he was a kind of doctor I feel like I should have said more but I also feel like naive in the sense that I’m not sure what other doctor do I go to because I’ve already put so much money into this one like what I do but he’s always like you ask you know so many questions and other patients with a when asked and I said well I’m going to ask the question anyway it’s like you just have to deal with me and I felt like maybe I should have left at that point I heard those comments but in my head I’m like well you got me pregnant twice you know after we did idea so it’s like I might as well just stick it out and see if you get beyond my end game is to get pregnant and then once we had no embryos left I was just he was surprised I was like nope I’m not I’m done I’m not coming back to you it’s so weird though isn’t it that like that you’re you’re right like they can they can tell a parent your your child has a hole in its heart and when its board this is what we’re gonna do but they don’t do that with down syndrome they just say your child has down syndrome you what do you want to do the M. I mean and we know what they’re implying and and because it’s it’s said with such a unusual and a lot of times it said with you know this is your only have certain amount of time before you can terminate this pregnancy has like digest all this information and go and even if it’s like they’re they’re telling you they’re telling you it already knowing what the answer should be I’m surprised since I don’t know I’m surprised it’s like where do you teach that like if you’re a resident like where does that come from like it’s what they don’t teach I think %HESITATION yeah yeah I wonder how much is spent on I don’t even know what do we call that realm do you call that room of OBGYN school we’ve talked to a doctor a specialist in Boston doctors Bryan Scott co and and he he admitted that that that’s something that needs to change in the medical community and he works on doing that through seminars but in the actual schooling I don’t know if that’s I’m bedside manners is something that’s taught generally I think it says the personal part of being a doctor and and I don’t see any any %HESITATION %HESITATION information given to people a to doctors about how to talk to prospective parents of someone with a disability well because honestly you go but you go back to down syndrome and it’s down syndrome it’s pretty specific because you know it’s it’s they they really I don’t I don’t I’ve known I’ve known other children born with different diagnoses that didn’t receive that same conversation the downturns the one everyone knows everybody knows have all the information of but they don’t have like from this is there looking back at a time when children weren’t educated when they weren’t supported when they didn’t receive early intervention when there was no P. T. R. O. T. E. N. a lot of times institutionalized a lot of where they’re still coming from is not the actual child in the light the potential of that life are the possibilities especially now and then with them everything that’s possible with with medical advances with everything that’s happening in where we are those conversations that doctors have are still coming from the doctors that said you don’t want to raise will take the baby and then they put in an institution and then looking at what happens to those children who are in institution and saying see this is what would have happened well no that’s not what would have happened if your child would have been raised you know with the supports right that’s not and but I think that that’s still what they’re grasping and that’s still where they’re coming from you know we were very fortunate that the geneticist that we’ve talked to %HESITATION when lamb was born what told us about all the possibility told us a few different cases where I remember one in particular and it’s like they never really talked about him having down syndrome and he wanted to drive a car drives car you learn to drive and that’s what he told us and I I kind of got the gist from him is that you you you make your own path to you you kind of support are you going to and the Ms pediatrician is a rock star and she was the same down the same vein you know we kept him on a typical growth chart for I think he’s still in a typical growth chart and she’ll tell us should be like this is where he is he’s in the you know ten percent for typical and then if you want to look he’s at fifty percentile with children with down syndrome but she shows us both and she knows she said when he falls if you ever falls off this one a stop using it but and and we were so fortunate to once we got out of the neck you to have those voices you know and have you have Caroline have Nate then like we were so fortunate that this is what surrounded us and you know and then Liam’s gonna be a product of that and it’s gonna be a lot different than whatever that doctor had in mind when he told you what do you want to do that’s it’s going to be something that he probably could never even conceive of well you know the the medical community is built in a unique way and that you can go back sixty years let’s say and it’s not really that long ago where the go to is institution let’s say or you don’t need to even take this child home you know and so the way it works in the medical profession is that you’ve you’ve gone to college you then almost take up like in a partnership you know you’re going to and they do rounds with doctors to see learning from that doctor that doctor from sixty years ago that that was their go to so then that’s just handed down so you think about the generations we are from that sixty year old doctors made a lot of two generations down that we don’t that are in Africa anymore right and and you’re you’re getting a doctor from sixty years ago that and and you’re looking at two or three generations the most from where we are now of doctors who just in this apprenticeship format does it just kind of trickle down so it it takes it takes a change that I know what’s happening because we see doctors that think differently you know we see doctors that maybe got into the profession because their sibling of a of a child with down syndrome are of of personal tons of him or they know someone and they they’re going specifically into this to make a different method medicine but %HESITATION it’s gonna take those kind of people to to change the change the the narrative I will tell you about the phone call %HESITATION well before we did the blood test and the genetic counselors they’re very fine to the the talk with a therapist boys and they seem more understanding and calm about discussing everything so you know she was the one that would have called me I probably would have rather gone the phone call from the genetic counselor to get him because she probably would give it a more you troll and educated about it because that’s what she deals with all the longest doing counseling with people who have found that their kiddos and in any conditions so but that didn’t happen so %HESITATION that’s where we went from there thank you for sharing your story because it’s it’s a lot and it’s very personal and you know first of all just in it it’s not something that we as women talk about we don’t talk about in infertility we don’t talk about the the extremes that we go to because we want to be mothers and have children it’s not really a conversation and then the loss of the loss of a child through miscarriage that’s not something that we talk about and you know women are expected to go through this they’re expected to you have all the emotions and then move on and it’s like where were run over by this detached Troch of information a lot of it uninformed information that’s kind of dumped on us with no consideration to what that feels like and I can’t I can’t imagine what it was like to have one thing just be pummeled day day after day for that one week with one thing after the other and to have it com and in such a haphazard and I’m carrying way I am I am so sorry I also think back to when I told like my in laws and my sister in law and my family to the first reaction is crying and you feel like before it passed away you know it you’re just like and that’s that’s something that you we’ve discussed a few times with different gas that it’s different like you don’t all of a sudden that joy is taken away from you that that joy of this pregnancy is is you’re robbed of it because of basically the perception that the kind of the world has of down syndrome that word we’re trying to change and I think is is slowly changing and you know those people that are supposed to be so happy for us they they aren’t and I think I think it’s I know it comes from fear and I know it comes from love because they love you and then all they can all they have is fear because you know your mind goes to a place I mean our our mind went to a very dark place when we receive lambs diagnosis a lot from the way it was you know given to us that didn’t really help us to not go there but it do you want to talk about that like you’re sharing the news and yeah well the first I could say for me the first thoughts I think of okay to address I know the whole age span in terms of the school age fabulous with down syndrome what I keep thinking about it always stuck in my head from the TV show what are your plans and they’re like the parents we like our plan is to not die you know that is our plan and that’s what I think about you know when I’m older if you know I had this child with down syndrome you know who is going to take care of that and in this situation you know I have a step son who’s fourteen fourteen years older than my son so you you know Kevin and I were thinking can he be the one taking care of his little brother or sister and eight do you do we want I’m doing that you know it’s hard to picture you know twelve thirteen year old widow in that role that’s where you fast forward to that’s where I think like what am I going to do at the end and that’s that was my main concern I think I wasn’t concerned about the school years or anything it was just that you know what is life gonna be like for as an adult and now it’s my main fear and or I was just so torn and that’s why I feel like for me that’s where I see the least amount of information I know so much about zero to three I know so much about school stuff how are these kiddos %HESITATION Howard she’s people as adults you know and how are their lives and is it fulfilling and and and that’s where my as I kept going I kept crying thinking about that like what is going to happen to them and when that happens and my husband was also thinking is %HESITATION you know we we always think what we want in life and you know his thing is I want you know I wanted a partner in life in Reno will our child have a partner H. and I see that on the TV show as I always read the TV show that’s only example I have adult down syndrome but you know that at that age they all obviously what anybody wants at that age you know and they want a girlfriend he wants somebody to marry and that’s where my mind just ask for it to that you know it’s hard for me to think about like I was heartbreaking thing at what you know what is going to happen to them and maybe I think it’s because you don’t hear about it ever what happens to that you know them as adults and what’s gonna go on and we had spoken to him my sister her husband and had down syndrome I didn’t know that I don’t think I do that until after we had this pregnancy so so they %HESITATION had talked to us you know briefly and you know his mom was my sister’s husband’s parents were very understanding of all and they help you know take care of %HESITATION his ends and so they were understanding about all they were those like one adult and you would doubt that I have heard of that had down syndrome that was like a familial connection so that was there the one understanding once but yeah hearing everyone cry it just made me cry March fifth I was like you know you just feel like put in a very awkward place because you know had had the baby been fine then you think about okay I tell anyone else news and then you know the baby is you know we have this baby and everyone cries when I tell them because whoever knows this early into the previous down’s syndrome it’s not very common to find out so soon that would have been very stressful knowing it was inspired to many and I’m especially you know I work in special education and I don’t have a child with down syndrome it would it would it I don’t know what kind of connections that would’ve been able to keep with certain family members or friends and I had I seen reactions that I did not want to see yeah I think that creates a lot of strain on relationships because you do I mean we we had enough %HESITATION we did have someone to say make a comment and then years later %HESITATION emailed me saying I just found this email that I sent you and I apologize and you know it but that out of so so many people who had those reactions and I think that you had those fears about what’s going to happen first of all is it on like how you feel about your son now like it’s the same you’ve you have that same worry no more no matter what no matter how many chromosomes are there you’re always as a parent worried about your kids but nobody puts that in perspective Teo nobody nobody guide you there because they have that same worry and I think that’s the part of the perception that definitely needs to change because it’s not out there and I think it goes hand in hand you know really if you look at generations before because you do have a history where you know these children these babies were institutionalized and I can’t name a healthy typical adult that if you didn’t institutionalize them as a baby would not have severe limits on on their success as far as life and I think that’s all we have is an example and one of the challenges for Steven I when the %HESITATION was born is you know you get let down these paths of all you have to see this because this is great and you go and these that depictions that are being exalted as just so fabulous stories are are horrible and horrific because that’s all but that was all that was out there and I do think with like born this way and you know social media I’m I’m not a big big user of social media but this is where it it’s so good because you have these people that didn’t really have a voice that they have a voice now and you’re seeing you’re seeing that it’s not all what’s been presented yes not like L. O. there’s that one person with down syndrome they got married you know there’s there’s no that’s all these examples right near like %HESITATION okay it’s not like this anomaly saying it’s all these people that are live in these amazing lives and doing things that have never been done before in doing things that are so critical to normal you know less than normal adult lives but we can that I think of of technology so much is made me feel good because I I’m kind of a tech guy and I just think of all safety tech for Sophia you know like I think of of all these safer cars and and and having information at their fingertips and even I mean this is going to sound weird maybe glory and some other people too but even having robots in your house or art or aids in that way mechanical aids I see that for Liam as well to give him more independence and because we’re we’re looking you know thirty forty years down the line and and our goal is to stay alive to like when you ask these these %HESITATION Michael first of all let’s see is there life that’s how I would get my goal yeah when I do I go for me I would stay alive I want to stay alive to be a grandparent for both of their kids I wanna I wanna I wanna I wanna help guide them in their adult life and and I I would worry about that I worry about that with both of them I think that the difference between Steven and night and I can still hear it sometimes like when he’ll talk about that and that concern and because I haven’t I’ve never doubted and and if it doesn’t happen then okay then I was wrong but I’ve never doubted Liam’s ability to have an independent life and that at all the pot the same possibilities that are there for Sophia can be there for them as well and I don’t know where that came from I don’t know if it’s just like that kind of when people tell me no I didn’t take that for the answer and I was just like you where we’re going to do then we’ll do it our way %HESITATION and and %HESITATION I definitely feel more that now than I did and that has a lot to do with live with you and your positivity and and and then also seen it I mean I I am someone that that may need a little bit more of that but we have I’ve seen so much of these stories that we just want to shout out to the world and and tell I think we feel like it’s slowly change you know it’s it’s I feel like it’s a it’s a conversation that’s changing because I don’t know maybe one day would be great if it wasn’t such a big deal and so much energy wasn’t put into the discounting of anybody’s life to save one life isn’t equal to another to another and I think you having you having the experience with children with down syndrome I mean it’s a crime what a gift because I can’t imagine first of all I can’t imagine just the attack on your journey I can’t imagine just that that tack on you just all these emotions and all these words beans just thrown at you I can’t imagine what that was like but you know just having an site hacked and understanding the possibility of your child it was just hard everyone would always say well you know luckily you miscarried you know and it was always %HESITATION in and it was always hard to hear that and I would always come back like you know I wish obviously that I was kept the pregnancy and had a healthy child you know that yeah yeah I was weird you know that was always the what I heard and I can’t believe people who say that to you I mean well things are changing slowly I know which is a woman %HESITATION I mean just even just miss kid like that that’s the horror of a miscarriage is what that losses is to to to minimize fat loss into this almost sweep it under the rug I mean I guess that’s thank you and have a you know without that %HESITATION Peter did I don’t know did anybody ever ask you how you felt did I mean I don’t think so I don’t I mean like my parents obviously but you know they’re they always ask so but %HESITATION no and then my friends did you know because four years ago so it’s hard for me to remember the only conversations I had in my close friends with Sam sorry about it you know one I guess I’m sorry that the baby had down’s syndrome and that’s why the baby passed away you know %HESITATION out there sorry about that %HESITATION somewhere sorry in general but it is always the main comment like well this is meant to be this way you know and and bring somebody with that’s infertile you just you hate that statement all the time that you know work it’ll happen when it’s supposed to happen like those statements just you know make me cringe and that’s kind of what I got a lot you know this you know you know he will say it’s god’s will I’m sure you hear that yeah I’ll pray for your child it’s god’s will let that kind of stuff you know only you know what let’s not say that is so %HESITATION the talk about how you guys said how social media has helped because of you know this was four years ago when all this happened I started following all these accounts of parents without you know kids with down syndrome and then you see on social media communities that form of parents raising children with down syndrome and I also join all the communities of people infertility and you just see the common thread of seeing you know people like you you’re not alone and people seem like this is a life worth living in terms of the infertility life you know if somebody decides not to have children anymore that it’s still a life worth living and I was looking at that passed to because we don’t know what’s gonna happen so same way I was looking towards the future me like I’m this is there are people like me out there and they’re happy and life will be okay if you’re you know if you know me never got pregnant but I I really again I feel drawn to all the families with kids with down syndrome because I just I just wanted to see that life as well and I I came across and even online account that you want to check her out and she got pregnant infertility treatments like me %HESITATION but she didn’t tester embryos and she had twins and one has down syndrome and one does not so she’s raising twin girls %HESITATION and she just had a third child through %HESITATION ideas as well so she has the twins won with down syndrome one that doesn and then another girl that is %HESITATION yeah that has no genetic issues so she has her three daughters and I follow her life is I feel like that could have been me like what you know what’s that like and so on how does that make you feel like watching watching not I’m feeling like I like you know I would have been okay like this I could have done it Hey at in was doable I kind of feel weirdly like left out of that community now because it’s you know great soul ties to it is a really never had that child the downs and I feel like left out of it the reason I keep following all these families of kids with down syndrome they just feel drawn to it like in my head I have this imaginary life and how it would have been you know raising a killer with down syndrome and I follow if you I mean I have a lot of accounts I follow people a family with down syndrome one who you might like I don’t know if you have to look at her name but she adopted two children and I want to see from Romania that were like institutionalized and she got she got that one of the age of twelve you know how she is now on the other kid or what should happen in the Unger but she talks a lot about her life I mean you know her life raising them but how you know how it’s been emotionally helping them recover %HESITATION you know as much as they can from being institutionalized when you look at all these you see all the comments have you know family supporting each other you know and you’re saying it’s just all basically we would see in any mom Instagram page and I don’t follow any of those accounts I cannot stand regular mom the fertile women Instagram pages like those are not those I feel like you know like you know I’m sure you see like year round I appreciate all the little things now and I feel like typical accounts don’t do that you just complain about a lot of stuff yeah but I don’t I don’t see that in my accounts of children with special needs other example again other diagnoses actual we see a an eight year you see a whole different type of parenting and more supportive parenting all those Instagram pages versus the typical mom Instagram page well we were just having this conversation today because I don’t judge anybody and I know everybody’s doing their best I do know that we have a different appreciation one for the little like even when they have got out of the neck you we automatically just had appreciation that he was alive right and I think we do definitely appreciate every single milestone and moment and the things that that people sometimes will complain about that I feel like the quarantine was a big equalizer yes the things that we’ve been doing for ten years now other families of typical children had to then do and it wasn’t easy M. and in there was a lot of belly ache and and you know where Steven I just were like okay well you know that’s that was that was a gift that the gift of lamb to just go we got this and we’re going to do it like this and that’s it’s unfortunate because the way the news is given to parents and the pitcher that is still painted a lot you know I think I’d again I think it’s changing I think it changes because of social media I think it changes because the matter a new you know crop of medical profession is coming up a more inclusive based professionals and so I think it it is slowly changing and I think that you know it’s unfortunate that that’s the way that we’ll still give news and that they see down syndrome because there’s so many gifts that never get talked about like people don’t talk about it doctors don’t talk about the immense love they don’t talk about the positive effect it has on your family and on the siblings as far as just you know as you see Sophia who’s so protective but also so if it is often said you know I I’m not gonna complain or not tackle this challenge because she sees them doing it all the time you know our family always says Williams the hardest worker and it’s unfortunate that you if you had to experience the negative side of it you know because I’ll tell you that you’re just such a great human I am I am so sorry people said things that were so hurtful that took away from your celebration and then really dishonored your loss and your ability to to grief and I’d just I wish we could we could have done something at the time to to bring you comfort or ease thank you yeah I am having this conversation you know allows me to think about more like yeah way enough to help someone else in this situation what would help to here would help to hear at that point if you found out early in pregnancy and also to educate the next position I come by about how to talk to talk to somebody about that versus what I had to go through Please follow us on Twitter @ifweknewthenPOD you can drop us a line on our Facebook page @ifweknewthenPOD or visit our website https://www.IfWeKnewThen.com to send us an email with questions and comments. You can join our mailing list there and get alerts of future podcast episodes. Thank you again and we look forward to you joining us on the next episode of IF WE KNEW THEN.

Create your website with WordPress.com
Get started
%d bloggers like this: