Sisterhood of Angel Mama’s Magazine | Issue 03
Written and Photo by Chrystle Windish
“We are so sorry, we have done all we can.” Is the phrase no parent, let alone any person wants to hear. Let’s rewind to the beginning. Hi, my name is Chrystle and I am an UCD Mama, CHD and Infant Loss Warrior. I have a wonderful husband, Don, together for fifteen years, married for almost seven. We have four beautiful children, three of them earth-side, one in heaven and two we never had the chance to meet, so I guess you could say I have six beautiful children, and we are no strangers to heartbreak.
Our pregnancy journey started with two miscarriages almost exactly a year from each other. Wondering why this was happening to us, we continued to try again, finally getting pregnant and finding that my body was unable to produce progesterone on its own to keep a viable pregnancy; so I needed supplements. My rainbow baby was here, with complications of my body nothing to do with him, but to discover he had a rare Urea Cycle Disorder that resulted in a whole different type of pain, but that is a different story for a different day.
We decided to try for another and had our beautiful daughter, no major issues for her, of course more issues for me. Scared, to try any further I went on birth control for two years. After the two years and complications with the birth control, we had talked about trying to see if maybe the third time would be the charm. Joke was on me. Harder complications with my body, several surgeries during pregnancy, but gave birth to our second son. Three years later and after many talks, we decided to have our fourth and final child. Again wishful thinking that maybe this time pregnancy would be better now that I was older, healthier and took all the necessary steps to having a healthy pregnancy and for the most part I was having a great experience.
January 1, 2021 I had my confirmation with a home pregnancy test that said positive. My husband and I were ecstatic! All our OB/GYN appointments were going great. Until we went into our 19 weeks scan. We knew we were expecting another little boy due to having the genetic blood testing done. Laying on the bed in the Maternal Fetal Medicine Clinic, having our scan done, the ultrasound tech stopped and said, “I need to go get the doctor. Please do not leave. There is something wrong with the heart”. I laid in the bed, staring at my husband and went blank. Scared about what we were going to hear as we already have a son with a rare Urea Cycle Genetic Disorder, a nephew with CHD, and a family history of heart disease. The MFM specialist comes in and tells us that this is something she has not seen before and needs us to see a cardiologist.
Later that week, we went to meet the cardiologist and learned that our unborn baby boy had a rare heart defect called Ebstein Anomaly, on the very severe spectrum. Ebstein Anomaly affects the tricuspid valve in the heart. A normally functioning heart’s valve closed together tightly, not allowing blood to flow back into the upper chamber; our little boy’s heart wasn’t. His heart had a huge gap, allowing blood to flow back into the upper chamber. We were told we would need to have monthly echo’s done, and would now have to go see the MFM team twice weekly for ultrasounds to monitor and make sure no hydrops would develop, along with given the statistics of life of 70% survival rate. We were given the option to terminate the pregnancy, however we chose not to. We wanted to give our little boy a chance at life. I went to every appointment, never missing one. A month later, we are at our second echo and the cardiologist now tells us we have another issue with the heart that normally goes hand in hand with Ebstein. His circular shunt was having some reflux of blood and was not closing. Heart broken again, we went home to research and do everything possible to give our baby a chance of life. I changed my diet. I would go on walks as long as I was not hurting physically, I was drinking plenty of water and etc. The list goes on and on.
Fast forward to 35 weeks and 1 day, my husband’s grandmother had just passed and we were at her funeral, after sending her off we drove to the MFM clinic for my weekly appointments. Everything that I was able to see was looking stable (after going so many times and talking with the techs, you start to pick up on some things they are looking for on the scan without them even telling you), today was not that day. As I am brought to another room for my OB check, the tech says, ‘We wish you the best of luck and if for some reason they don’t do something today we will see you Friday’, as they took me to a small conference room versus the normal OB room I have seen many times prior. The MFM specialist comes in and after sitting in the room for roughly 10 minutes with tears in her eyes “Chrystle, I am so sorry but we need to deliver the baby today. He is in heart failure and the cardiologist needs to operate immediately”.
After talking about what would happen next, I was told to stay in the room and to wait for transportation to bring me over to Labor and Delivery. I called my husband in tears, “Babe, you need to take the kids to your mom’s house and get back down here. Bentley is in heart failure and they are preparing me for an emergency c-section. I will do my best to wait for you to get back down here”. I was brought over to Labor and Delivery and the next few hours were a blur of many people coming in, introducing themselves and telling me the next steps. With some time to spare, my husband got there in time and tried his hardest to calm my nerves. It was now time to go back and start the c-section; I expressed to the anesthesiologist that I have major anxiety about having the spinal done as I had a spinal tap done for a test that went horribly wrong before and was traumatized. She did her best, however it just did not work for me. I was not going numb and felt everything, next step I was fully sedated.
Waking up in the recovery room, my first thought and words was “Bentley Bo, how is my Bentley”, what felt like a second of rest, a nurse comes running into the room saying “We need her in NICU now, Bentley needs to go to the OR” I immediately wake up and start asking questions. Is he okay? What is wrong? Why does he need to go into the OR now? I was brought into the NICU, and had people lined up along the walls looking at me, having sad faces, looking at me like they knew something that I didn’t. I was greeted by my husband, along with the whole medical team trying to explain to me what was going on and what occurred. All I can remember was holding my baby’s hand, crying, begging GOD to protect him while he was getting ready to go into surgery. They took him out of the room and wheeled him to the OR as I was brought to antepartum. While the nurses were trying to get me to relax and rest, I couldn’t. My brain would not shut off. I couldn’t rest until I knew my baby was okay. 5:30am, the phone rings “Hi Chrystle, Bentley is out of surgery and he is doing well, however he is still very sick. You can come see him in his room in a couple of hours”. There, I heard it. I can finally rest and fall asleep for the few hour nap. After napping, the nurse comes in, does vitals and such and offers to take us down to see Bentley. Sore and in pain, I jump out of bed and get into the wheelchair.
Finally able to see my baby and to hear of his surgery, the attending physician comes in and informs us they need to perform yet another surgery right away. As fast as I was able to see my baby, it was as fast as I was being escorted out. Up to my room again to wait, only this time was a shorter wait time. We got the phone call and we could come see him again and again as fast as I could, we were down there. Touching his hands, tickling his feet, kissing his head. After spending some time with him, we decided to go up to the room to order lunch, just to be greeted by the heart surgeon saying they needed to perform yet another surgery. WHAT?!! My baby is not even 26 hours old and another surgery? They explained they needed him to be on ECMO to help his body relax and to give his heart a break and to allow this machine to do the work for him, HOWEVER there are some risks of using this machine. It could cause complications and in the worst case, a brain bleed that would result in death. Do we have any other options? No, this is the last option we have. The surgery was done and he was thriving and doing great. The next day I was discharged.
I went home, cried that I was not able to have him home with me snuggling in bed together, meeting his brothers, sister and his family. The next morning we went and saw him. After having his daily head scan, the room started to spin. People running in and out, tests being performed, the room was in chaos. My husband and I holding each other in the corner are greeted with the team informing us that the brain bleed happened. He was being brought down for a CT to see the severity of it. Not too long after, we were asked to go into a conference room so we could have a meeting with the whole medical team. I remember walking in and seeing people crying, the heart surgeon, cardiology, NICU, people part of the team who had the day off all sitting around the table. Once we sat we were told those words no parent or person ever wants to hear. “We are so sorry, we have done all we can.”
At 4 days old, I was able to hold my baby in my arms for the first and last time. I was stealing my last kisses, my last snuggles. Our parents were able to come to the hospital during this time and be there for us, and to be able to meet their grandson, along with saying their goodbyes. As I was saying my final goodbye with him laying in his bed, he looked up at us, smiling and started to move his mouth. It looked like he was telling us “I love you.” My baby boy, Bentley Bo, took his final breath at 5 days old on August 15, 2021 at 12:28 am. Going home with empty arms, a car full of his items from the hospital, to walk into the house with all his things waiting for him, to never be used. To have to find the courage and a way to explain to his brothers and sister that they will never be able to meet him, but he is always with us. To explain that we are a family of 6 even though we look to be a family of 5. To explain to our friends and family, to find a way to navigate life with a broken heart.
Over the next week, we planned his farewell. We choose to not have a funeral but to keep it very small and private, with potentially having a celebration of life at a later date and to be able to process this time with family and to be there for one another. Fast forward to today, almost six months later and my heart is still broken, I still cry everyday, my children cry, my husband, family and friends. I have his picture up in every room of the house. We continue to talk about him and often find ourselves asking what he would be doing now and should his body be able to handle ECMO. People say that it gets easier with time. It doesn’t. We just learn to live with the hurt, the unanswered questions and the what ifs? There is not a day that goes by that we think of the medical team, wonder how they are doing and wonder if they know that we are forever thankful for them doing all they could do. Used everything they could to protect him and to give him a fighting chance. I find myself sitting on the couch daydreaming, looking out the window thinking of him. Feeling that I am alone in this journey, but then I give myself a pinch to bring myself back to reality to remind myself that I’m not. There are others out there who have similar stories, who feel the same heartbreak as I do, who have the longing to hold their baby that they won’t be able to do until we are brought back together in heaven.
I am thankful to have my three children earth side, to have my nephews and nieces to have as distraction and our family to lift us up when we are feeling down. I pray daily for not only my health and mental clarity, but for all the other parents out there in the same boat. You’re not alone in this walk of life, I am right there with you. May all our babies rest in peace, play together in the fields of flowers, with the sunshine on their beautiful faces waiting for the day we can be there with them, but until that day, they are carried in our hearts never to be forgotten.