Saturday, October 15, 2016

Rayden - My Infant Loss Story


My husband and I are highschool sweethearts. We knew from the moment that we saw each other that we would spend the rest of our lives together. I instantly became a believer of love at first sight, soulmates, all that mushy, romantic movie stuff. We talked about kids early in our relationship, but we were young and had plenty of time to wait. It never crossed our minds that it might be difficult.

A pregnancy never happened the conventional way even with a few years of trying. We really wanted kids, so we met with my OB who ran some basic tests and sent us to a urologist. We were then informed that we would be unsuccessful getting pregnant on our own.  We were referred to Utah Center for Reproductive Medicine where we were told, based on our diagnoses, our only option was IVF with ICSI. We did one cycle of IVF that was canceled prior to retrieval. We were devastated. We saved for years to pay for that cycle and we were left with nothing. We did learn that I had diminished ovarian reserve and would need to try again with a more aggressive medication stimulation.




Shortly after our canceled IVF cycle we were asked to take in my niece and nephew while their parents got their lives together. So we decided to put our fertility treatments on hold until we knew what was going to happen with them. A year and a half later we legally adopted both of them.


A few months later we were ready to try IVF with ICSI again. In June 2010, we transferred 2 blastocysts. And on July 3, 2010 we found out we were pregnant with twins. I had very minimal morning sickness and everything was going great until 19 weeks. I was scheduled for a routine ultrasound to make sure that both babies had all their organs and make sure they were growing well. This wasn’t the first ultrasound and wouldn’t be the last. With twins, the doctors tend to do multiple ultrasounds. 


During the ultrasound, the technician took a long time checking out both babies. She checked baby B first and was telling us all the organs she was seeing and she told us that baby B was a girl! Then she started checking baby A. She became a little quiet and stopped answering our questions. I knew that something wasn’t right when she told us that she needed to go get the doctor to help her. That was the point that I knew for certain there was something wrong. My chest tightened, my stomach turned, it felt as though there was a rock in my throat. Then the tears escaped my eyes and rolling down the side of my face. There was something wrong with the baby that I had waited many years for. The baby I had prayed many times for. 


The doctor came in and checked out both babies then sat me up. He then told us that there was a problem with baby A. He had very little amniotic fluid. This could mean one of three things; I needed to drink more water, I had ruptured a membrane and was leaking fluid, or that the baby didn’t have any kidneys. He assured me that the baby had kidneys. He verified it on the ultrasound. He sent me home with a lot of hope that all would be well in the end. I knew, deep down that it wasn’t going to be, but I pushed those thoughts to the back of my mind and stayed optimistic. 


I had already been drinking tons of water during the pregnancy but I still increased my water intake after that ultrasound. I was put on modified bedrest, meaning, I was to sit as much as possible, minimize my walking, and no bending over. Over the next 17 weeks, we continued seeing my OB every week and having a high level ultrasound every 2 weeks. I met with seven different perinatologists, all of whom were baffled by my baby A. The fluid levels never got higher. The baby continued to grow normally. I was not having any complications. They all saw kidneys at every ultrasound. I was ultimately told that my baby would probably need help breathing at first but that in the end the baby would be fine. 


On February 11, 2011, at 36 weeks pregnant, I walked into the hospital for a scheduled c-section. In the back of my mind I knew my life would never be the same and not because I was about to be caring for two babies. They never were able to tell me the sex of baby A but I knew in my heart that baby A was a boy. My twins were born and they immediately took them to the nursery. Rayden Zachary was 6 pounds 9 ounces. Raylin Rose was 5 pounds 3 ounces. 


Rayden, who had no fluid, was not ‘pinking’ up. They decided to transport him to Primary Children's Hospital about 30 minutes from the hospital I was in. They did bring him in to see me before they left, mainly because they needed my signature to transport him. Rayden was in an incubator and I was able to touch him but not hold him. They were in my room for a total of 2 minutes. I sent my husband with him so he wouldn’t be alone. 


About an hour later my husband called to tell me that they had done an ultrasound on our son and he, in fact, did not have any kidneys. My heart was crushed! I had done research and I knew exactly what that meant. My son was going to die before I ever got the chance to hold him.

Rayden had what is called Potter's Syndrome. His kidneys never developed which meant he did not urinate and therefore had no amniotic fluid. The amniotic fluid is what helps develop the lungs and since he didn’t have much, his lungs were severely underdeveloped. This condition is incompatible with life.


Shortly after the phone call about the diagnosis my husband called again. This time to let me know that they were taking him off the ventilator. His poor body was giving out and they thought it was best to let him go. I said goodbye to my son on speaker phone. I told him it was ok and that I loved him. My husband and I cried together, over the phone, each of us holding a baby. 


Rayden died due to pulmonary hypotension as a result of bilateral renal agenesis. They did bring his body back to me that night. I was able to hold him, kiss him, have his pictures taken. His life was brief, 4 hours, but the mark he left in my heart will remain for eternity. He will always be my baby boy.


His twin sister, Raylin, is now five and a half. She started kindergarten a few months ago. It has been very difficult to watch her reach milestones and not have her twin brother next to her. He came into this world with her. He stayed long enough to make sure she would be safe. Then he returned home to his Heavenly Father. She knows about him and talks about him often. She is not shy about telling people she is a twin. I pray that the connection and love of her brother remains for the rest of her life. Once a twin, always a twin.


We celebrate his life every year by doing random acts of kindness. We have donated trees to the Festival of Trees that benefits Primary Children’s Hospital. We had one tree that raised just under $10,000 in his memory. We collect items to take to the children's hospital also. Rayden’s picture can be found in almost every room of our home and in all our family pictures. He will forever be a part of our family. 
October 15th is pregnancy and infant loss awareness day. Every year we light a candle for Rayden and all the other babies that have gone too soon. I believe that they are watching over us and as each house lights a candle at 7pm, it creates a wave of light around the world. All the Angels in Heaven can see that they are loved and missed.

Aupera Van Huizen is the Director of Support Services for Utah Infertility Resource Center

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