By: Amanda Seiple
I had my twin sons via emergency c-section on 10/29/2019, just a day before my own birthday. They had twin to twin transfusion syndrome, with my son Wyatt having polyhydramnios (too much fluid) and my son Brayden having oligohydramnios (not enough fluid). Wyatt’s polyhydramnios was so severe that I had to have 2 separate amniocentesis just to be able to breathe. After my second amnio, I developed a fever and an infection in the fluid surrounding my sons. So off to the emergency room we went, and my sons were taken out of me only a couple hours later. They were delivered at 28 weeks and 1 day.
Everything was truly a blur, it didn’t feel real at all. I just went through the motions. I knew things were serious, even dangerous, but it didn’t hit me how bad things were until I was brought into the NICU later that day and I only got to see my sons through their isolettes. I couldn’t hold them, couldn’t touch them, I could only watch and press my hand against the isolette as some form of contact. That was a very tough pill to swallow but I knew it was ultimately for the best.
I got to hold Brayden the next day on my birthday, for the first time. Wyatt wasn’t as stable so I only got to hold Brayden. He wrapped his tiny hand around my finger and nestled into my chest and I was in love. I would have stayed like that forever if it was possible. Over the next few days, things seemed okay. I was still healing but the boys were stable and I couldn’t complain. This is where things take a turn for the worse…
After a few days, Brayden started getting sicker and we couldn’t figure out what was wrong. The neonatologists ran several tests including ultrasounds to see if they could figure out what was causing his issues. They kept pulling blood from his stomach and he wasn’t tolerating his feeds. I’m a general and cardiac ultrasound tech so I knew what the scans were looking like before we even got a report back. His heart was in failure, his kidneys were in failure and he had fluid on his brain. It was both a blessing and a curse to see what was happening inside Brayden’s body. I could mentally prepare myself for the report, but I also could see just how dire his situation was.
The doctors tried everything to stabilize him but to no avail. I watched in agony as my sons life slowly slipped away over the course of 14 days. He passed away on 11/12/2019 in his daddy’s arms and it was the worst day of my life.
Did you know it’s possible to die from a broken heart? It’s a very real condition called Takotsubo syndrome, or “broken heart syndrome.” It can sometimes happen in response to extreme stress, such as losing a child. I was convinced I had it, the pain of losing one of my sons was so severe. It wasn’t until I scanned myself to look, surprised to see my heart beating normally, that I felt the strength to continue. I was able to slowly pull myself from the dark depths of my mind and keep going back to the very NICU that Brayden passed in, to care for Wyatt.
I was reminded of Brayden’s death every single second we were in the NICU to visit Wyatt. Every milestone Wyatt achieved was a knife in my heart knowing Brayden would never achieve those same milestones. I’m still affected by this, seeing Wyatt running after his older sister Emma playing and laughing knowing I’m supposed to have two sons here with us.
Wyatt was discharged on 01/12/2020 after 76 long days in the NICU. Bringing him home brought me some peace, that he was on the right track and everything could be ok. We introduced him to his big sister Emma and they’ve been inseparable ever since.
I know Brayden watches over us. On the day of his funeral it hadn’t rained a drop but my boyfriend and I swear we saw a rainbow in the sky as we drove to the funeral home. Ever since then, rainbows remind us of Brayden and we take them as a sign that he’s near.
Nothing is easy about losing a child, and I wish with everything I have in me that I could feel his little body against my chest one last time, or hear his little cry. I will never be the same. As always with grief, some days are easier than others but it is never easy. Everything I do now is for Emma, Brayden and Wyatt. They are the reason I exist, breathe, and attempt to enjoy life again.
Becoming an ambassador for Graham’s Foundation means I get to help Brayden’s life and soul live on. I get to make his and Wyatt’s story known, and in the process help other families with infant loss to know they are not alone.
It has taken me a long time to be able to speak about what happened with our NICU journey. It’s still a struggle for me if I’m honest, but it’s therapeutic to write it down and get it out. My hope is for whomever reads this, if you’re struggling with a similar situation to me or even just a crazy NICU journey, to know that you are not alone. The bad days come but so do the good days, and you’ll get to the good days.
About the author:
Amanda works as a full time echo ultrasound technologist in the Philadelphia area. When she’s not working, she’s at home with her boyfriend Steve and two children Emma and Wyatt. Emma is the big sister, teaching Wyatt to chase her and play, getting him to babble more words. Wyatt is the adoring little brother, teaching Emma patience and sharing. Amanda shared with us that “Becoming a Graham’s Foundation Ambassador is so important to me. I’ve wanted to do something for Brayden and his memory for so long but never knew where to look or start. This gives me the chance to work with NICUs and bring comfort and awareness to fellow NICU families and families that know infant loss”.
If you have interest in becoming an Ambassador with Grahams Foundation please email us at [email protected]