Kaiden, Twin B of Monochorionc-Diamniotic identical twin boys, was diagnosed with Twin Anemia Polycythemia Sequence (TAPS) on May 22, 2024 at 28 weeks & 5 days gestation. He and his twin (Mateo) were closely monitored twice weekly by an exceptional Maternal Fetal Medicine (MFM) team and our beloved obstetrician. Over the course of 13 subsequent sonograms, TAPS measurements remained stable and the boys were concordantly growing. To our horror, on the last planned appointment prior to a set c-section date, Kaiden no longer had a heartbeat. Within hours the twins made their entry to the world via emergency c section and Kaiden Paul was delivered stillborn.
His twin brother, Mateo Kole, spent 15 days in the NICU with complications of polycythemia and prematurity. We are eternally grateful for Mateo’s health and know Kaiden kept his brother safe.
We will forever miss Kaiden, who he was and who he might have become. We hope Kaiden’s life and story leads to further research and creation of evidence based guidelines for the management and treatment of TAPS.
Kaiden’s Eulogy
given by Emilie at Kaiden’s celebration of life service on Friday August 9, 2024 (Kaiden & Mateo’s 40 week due date) at Christ the King Lutheran Church
For my youngest son:
As the only person who had the privilege to know and be with Kaiden every moment of his 241 days, I felt moved to speak today as hard as that may be. But I know we can all get through this together.
Getting married in October 2020, Eric and I didn’t have the opportunity to gather a large group of people we love all together in a beautiful Lutheran church. So, what a way to now find out who your people are: invite them to your infant son’s memorial service on a Friday afternoon. Y’all aced that test. Eric and I are so grateful for each of you and what you mean to our little family of 5.
Today is for Kaiden but also for the other known and unknown losses gathered here. For everyone who forever holds a person or dream in their heart because their arms are now empty. You sharing your stories and sadness with us make Eric & I feel less alone.
When we found out we were pregnant with statistically improbable twins we were shocked. How could this happen?! And why? Yes, we meet the actual medical diagnosis of old parents which makes you more likely to have multiples we were told – but still.
Even before we found out they were monochorionic and thus identical – one egg that split – I had a strong sense there was just too much personality to be contained in only one person. There was always meant to be two.
They each had their own ways in utero, Mateo felt pensive and steadfast. Or perhaps just unbearably squished as Twin A. While Kaiden, from the beginning, had strong feelings and big movements. He let me know his thoughts about standing long periods of time at work (he was not a fan), his love of the 3 of us weightlifting together & his joy the times we swam with their big brother Luke. I could feel his pure happiness when I ate Almond Joys or queso. He loved simultaneously tap dancing and kickboxing with Mateo and eventually sticking his foot through the tear in my abdominal wall to the point where I could trace each little toe toward the end of pregnancy.
Since his death, many of you have already shared the impact Kaiden has had on you – helping you feel empowered to have a hard or healing conversation, nudging you to finally try anxiety medication, taking extra time to appreciate a sunrise. I know these things will keep happening for everyone and we’d love if you keep sharing them with us.
In the early morning of June 29, fueled by pregnancy insomnia and a final dose of steroids to ready the boys’ lungs for their carefully planned July 3rd birthday, I felt compelled to write as I tend to do from time to time. The last paragraph of that writing – authored likely just 48 hours before Kaiden’s heart beat for the last time unbeknownst to me – feels powerful in hindsight. I’d like to share it with you as a part of me now thinks these words came from Kaiden and he’d want all of you to hear them.
“Entering these last few days of a medically tumultuous pregnancy, which I know will be my last, I reflect on how fundamentally this all feels to have changed me in ways I cannot fully grasp yet. I found access to a certain sense of peace or at least acceptance that I have not known before. Perhaps it’s Erics near perfect Blackjack analogy of keeping the cards “face down” and not having to worry until necessary. Sometimes I worry I’m not worrying enough – a classic worrier’s conundrum. But, better to keep the cards “face down” and remain fully present in the moment.
I also think I have a new inkling of understanding of what many of the patients I get to treat and parents I’ve supported at my job go through in their own uncertainties, hopes and sadness. Most of these families can tell you of a “before” and an “after”. Our cards are still largely face down but my mind does seem to separate to “before Twin Anemia Polycythemia Sequence ” and “after our diagnosis”. And after TAPS has included many moments of incredible joy and gratitude, in a way I’m not sure I had access to before. I hope that continues in the after.”
So back here in this present moment, the after looks vastly different than any of us could have ever imagined. Each of you are a part of the after and we couldn’t do this new after without you.
Thank you Kaiden for all you taught me and continue to teach each of us. May we all carry that forward.