I’ve thought about writing this blog for a long time but it’s a vulnerable and controversial topic. I mentioned my journey with IVF/PGD in my memoir, “Silence and Light” but even then I wasn’t ready to share my thoughts on this sensitive topic. But, today as my younger son, Dalton, started college in high school, I was struck with how proud I am of him and how grateful I am that he is my son. He is amazing is so many ways and I can't imagine life without him in it. He is such a blessing - in all the amazing ways.
Please bear with me and give me grace as I talk about this subject. If I upset anyone because of anything I say, I deeply apologize. This isn’t my intent. I only hope to share my experience and knowledge I have gained about disability, that has shifted my thinking about family planning options. In this blog, I share my IVF/ failed PGD journey to conceive my 4th son, Dalton. I also share what I’ve learned since then and my current thinking.
My views about disability have changed a lot over the past 25 years. When Conner was born profoundly deaf I really had never been around another person with a disability. The fear of not knowing what Conner’s future would hold was the scariest part. Todd and I met with well meaning doctors who discussed with us how to “fix” our child. I was confused but I trusted them. I didn’t know any better.
Our IVF Journey
When Todd and I received Conner's Usher syndrome diagnosis, I grieved - hard. I thought to myself “Why couldn’t it be me instead?” I blamed myself for passing this on to him. I didn’t know any better and I was sad and angry. My family never went to church growing up but I believed in God - I just never talked about it. At this time, however, I was confused. I was angry because I desperately wanted to understand why this was happening. I felt like our world had crumbled. How could it get any worse? How was this happening to our sweet baby boy?
Somehow we figured out how to parent and advocate for Conner, and his younger brother Cole. We desperately wanted more children but we were scared. The entire thing seemed so complicated and there were so many societal, cultural, religious, and other pressures to consider.
It took us six years to finally be ok with trying for a third child (we were pregnant with our second child, Cole, when we received Conner’s diagnosis so this was the first time we had to consider all the complexities). Conner's eyesight seemed ok, there was hope for a cure, and we were feeling pretty ok with having another child. We ultimately ended up getting pregnant with Hunter naturally. I recall people looking at us like we were irresponsible. Maybe it was just my insecurities but I felt like people were thinking “How selfish of you for taking the risk to possibly have another child who may have Usher syndrome - who will be Deafblind.” These looks were similar to the ones we received when we found out about Conner - those were looks of pity - looks of ‘thank goodness it isn’t my child’. These looks of pregnant me were a combination of pity and judgment - it led me to feel shame, even though this should be such a happy time.
Hunter was such an easy baby, but the big age gap between our second and third kids made Hunter seem like an only child. Our two oldest sons were 17 months apart and such good friends. We wanted that for Hunter too. But, the nagging doubt and guilt remained: Was it irresponsible for us to have a fourth baby?
Conner was starting to experience vision issues and we were trying to navigate these new changes in his condition while juggling three children (one of them a busy baby) . It was kind of crazy looking back.
But, still, I wanted one more. My dad had MS and because I was an only child, I didn’t have any siblings to turn to when things got hard. There are many reasons why but we simply felt like our family wasn’t complete yet.
Genetics testing twenty five years ago was not what it is now. After we found out that Conner was deaf, we did the basic genetics panel to screen for possible causes of the deafness but we never found anything. Years later, when we received the clinical diagnosis of Usher syndrome, we wanted to be sure of the results, so we sought out further genetics testing. Genetics testing for Usher was only available in the research lab setting. We were thrilled when a leading researcher agreed to run our tests for us. This is when we found out that Conner had Usher syndrome type 1b.
A friend of mine had mentioned that she was looking into PGD (Preimplantation Genetics Diagnosis) with IVF for her family, as a means of family planning. Her daughter had a different disability. I had no idea what she was talking about but this sounded great. In my naivety I thought it was a way to avoid those looks of pity and those feelings of shame. I thought to myself - wow, we can still a fourth child but be responsible in doing so.
We made an appointment with the fertility clinic and things moved quickly. We met with the genetics company who would be running the tests on the embryos and we felt positive about the entire process (well, everything but all the needles I’d have to endure). We ended up proceeding with the PGD/IVF and ended up with 2 healthy embryos. There were so many appointments and I was drained emotionally and physically. We ultimately chose to implant the healthiest looking one of the two. We were elated. Our dreams were going to come true.
Pregnancy was great and although I still got weird looks, it was mostly because people thought we were crazy for wanting four kids, not because we were being irresponsible. We thought life was good. But in the back of my mind, I also felt guilty for doing this; so many families struggle with fertility and yet I was doing IVF for another purpose. Was that right? Was it ethical to be able to do this? To what extent? So, while we were relieved, I also felt guilt and shame - a different kind of shame.
Fast forward nine months…Dalton was born on a beautiful spring day in 2008 - April 24th to be exact. I remember not even being nervous about the newborn hearing screening because “we had done everything to prevent Usher syndrome”. We were certain he wouldn’t have it. He was born healthy and I was so happy - he was the perfect final addition to our family.
But, our world crumbled one more time when we saw the look on the hearing screening technician's face as she told us that Dalton failed the newborn hearing screening. I was in shock. I was angry. I was in disbelief. Oh my goodness. Did Dalton have hearing loss due to another genetic condition or reason? The PGD couldn’t have failed - it wasn’t possible. My life spun out of control. My hormones were raging due to childbirth and I was honestly freaking out.
Todd was amazing and got us into Seattle Children’s Hospital that next day to do more extensive testing with the audiologist we trusted. That next day, she confirmed our worst fear Dalton was profoundly deaf just like his brother, Conner.
I couldn’t breathe. I couldn’t think. I didn’t understand.
I looked into Dalton’s eye’s and that didn’t matter. I would protect him and love him like no other. He was meant to be mine. Perhaps he’s even more special because of all of this.
What I’ve learned since then
My thinking and understanding of disability has shifted so much since the day I heard “your son is profoundly deaf”. When Conner was about 10 (shortly after Dalton was born), he told me, “I don’t need to be fixed, I’m here for a reason. Don’t be sad, mom. I’m ok. I don’t know why this happened but it was meant to be.” Wiser than his years, that moment changed me forever.
From that day on, I started living more. Instead of hoping every day for a cure, I started enjoying my kids and my life more. I worked hard to no longer blame myself for their disability and instead started to embrace that this was my life - that this was their life. This was anything but easy - and still today, I have hard days.
I’ve had a lot of spiritual mentors since then that have helped me understand that these children were meant to be born to me - they needed me and I had something to give to them. I still don’t fully understand, but I’ve stopped asking. I’ve instead tried to be grateful for the lessons my kids have taught me - for all that I’ve learned by being their mom, for all that I’ve learned by struggling, for all that I’ve learned from the amazing Deafblind/USH community.
And you know what? My life is good. It has not looked like I anticipated. I especially didn’t anticipate Dalton having USH like Conner. But, it was the way it ended up. I am so grateful every day that I get to be Dalton’s mom, that God chose me to be the mom to all four of my kids. It is my biggest gift.
Do I still wish for a cure?
Of course I do. But I don’t let it consume my entire days like it used to.
Would I do IVF/PGD again if I had the opportunity?
No, actually I wouldn’t. I’ve learned that there are a lot of things I can’t control. And this was one of them. If Dalton was to be born with USH (as he did), he would. There was nothing I, or anyone else, could do about it. It was not up to me. I have put my trust in God.
Would I have more kids naturally if I know what I know now?
Yes, I would. My kids are such a blessing in my life and they bring me and so many people joy. I would absolutely do it again.
Last Take-Aways
When parents post on Facebook groups asking about IVF/PGD, I sometimes still get triggered, and I probably always will, and that is ok. I don’t think PTSD ever goes away, it just gets easier to manage over time, with the right support.
There is no right or wrong answer to any of this. Family planning is a very personal decision. What’s right for me, may not be right for someone else. We all have different societal, cultural and religious views of genetic testing, disability, and family planning.
So many people have been curious about this part of my journey. When well meaning people ask me, “What went wrong?” when they find out that the PGD failed for Dalton, I say, “Nothing went wrong. He’s perfect. He is even more special now. He is meant to be here and he is such a blessing in my and other people’s lives.” Usher syndrome robs them of two of their senses but Conner and Dalton are two of the most amazing humans I've met.
What I know now is there is no certainty in this world. I don’t know what happened with the PGD and I don’t care honestly. Maybe we didn’t know as much about USH genetics as we do now. Maybe there was a mistake in the lab. But, I can’t dwell on that.
So, if you are a parent, trying to decide whether to have more kids or whether to try IVF/PGD, no matter what you decide, it’ll be ok. It’ll be the right decision for you and don’t let anyone judge you for that. The only advice I can give you is to be ok with any outcome, because nothing is 100% certain.
If you are a friend or family member of someone making these difficult decisions, I hope my blog helps you to understand some of the complex and difficult feelings that go into a life decision like this.
Thank you for reading.
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