The founder of Angel Watch, Carolyn Kasteler, is putting together a collection of Angel Watch stories. Angel Watch was and is such a huge blessing to our family, so I was happy to contribute. Here is what I shared with Carolyn.
I am not sure I could ever really put into words how important Angel Watch is to our family's story. Your support and guidance during the hardest thing we've ever had to go through changed our lives in very significant ways. What a blessing it is to us to not only be able to remember Daniel and cherish his memory, but also to be able to celebrate him. I believe Angel Watch is the reason we were able to get through that difficult time as well as we did, and that we've been able to connect with others who have gone through or will go through similar things.
Daniel was a long-hoped-for, long-prayed-for baby. His older brother, Charlie, too. It took David and me five long years trying to conceive before we were finally blessed with Charlie, who just turned 15. When Charlie was about a year old, we decided we'd start trying again, knowing it might take a while again.
When we faced unexplained infertility again, we reached out to our doctors—again. This time, the medical procedure that seemed to have helped us to finally conceive our first, didn't do the trick the second time around. With some additional medical help, we conceived again, only to lose that pregnancy very early on. A few months later, we worked up the courage to try again, and I became pregnant with Daniel.
Daniel's pregnancy was stressful from the start. At one of my first OB appointments, they measured my progesterone, which came back at 0.9, about 1/10 the level it should be for a healthy pregnancy. I was told I was probably miscarrying, but that I could take progesterone to try to save the pregnancy.
I faithfully took the progesterone every day through week 14, even though it made me even sicker than I already was. It was a relief to be able to stop taking it, but also a little scary as I knew it had saved my pregnancy. As stressful as the pregnancy was, I do remember feeling that, finally, everything was right with my life. We were finally having another baby, so Charlie would have a sibling. Even though we wanted more children, if it didn't happen again, it would be okay because at least they'd have each other. I remember feeling like life was perfect, followed by a bit of a foreboding feeling that said, "Wait... maybe things are a little too perfect."
At my first ultrasound, around 9 weeks, I remember the woman performing the ultrasound mentioning that Daniel had no arm or leg buds, but nobody made a big deal about it. I remember he looked like a perfect little bean. We weren't worried.
A few weeks later, it was time for another ultrasound. The night before the ultrasound, Dave and I were excitedly anticipating the news the next day would bring. It was my turn to say our nightly prayer. I remember wanting to ask God for everything to go well at the ultrasound in the morning, but I couldn't say the words. I felt physically restrained from being able to ask for that. It didn't make me feel worried. The feeling was accompanied by a sense of comfort, and I didn't feel alarmed, but I did take notice.
The next morning at our appointment, I could tell almost from the start that there was something wrong, due to our ultrasound tech's demeanor. She was usually very cheerful, but she wasn't this time. My untrained eye couldn't see what the problems were, but I did notice that as she measured, numbers like "13" and "15" were popping up, instead of the expected "19," indicating that his measurements were weeks behind. She got the gender announcement out of the way as soon as she could.
I still remember Charlie's sweet little 4-year-old voice asking, "Is it a brother?"
It was a brother. Just what he wanted and had been waiting for.
As soon as she wrapped up her measurements, she set the equipment down and said, "I've got to be honest, you guys, I have some concerns."
She told us that she could see that the baby had some kind of dwarfism, and she guided us to a room where we could wait to see the doctor, away from other patients in the waiting room.
I remember sitting in that room with all three of my boys—David, Charlie, and Daniel in my belly. We were a little in shock, of course, but I wouldn't say I felt worried or sad. Just adjusting to the news that we were going to have a little person in our family. I knew it would be different and there would be things to learn, but I wasn't sad about it.
When Dr. Hughes joined us, he explained to us that there were hundreds of types of dwarfism and that a handful of those types were lethal. I had never known that before, but I still felt fine about it all. With hundreds of types, what were the chances ours would be one of the bad ones?
The nurse made us an appointment for the next day at McKay-Dee's Maternal-Fetal Medicine office.
At home that night, I remember a moment standing alone in my kitchen, and everything felt different. I was in this very familiar place in my home, but somehow all of my surroundings looked and felt unfamiliar. I knew that my life had just changed—big.
That night, I searched the internet and read everything I could about dwarfism and it's prenatal diagnosis. I learned more than I ever had before about achondroplasia, osteogenesis imperfecta, and a handful of other types of dwarfism. I briefly read about one called thanatophoric dysplasia, and I learned that when a baby with dwarfism had a "cloverleaf" skull, that only went with thanatophoric dysplasia, type 2, a lethal condition.
At our ultrasound the next day with a new tech and a new doctor, I remember how kind the tech was with us. Very friendly and talkative and doing her best to help us feel comfortable. As she measured our baby, I heard her say the words "cloverleaf skull." That was the first moment I felt any fear. A few minutes later we were joined by a genetic counselor who kindly suggested that it would be best for my own health to deliver the baby as soon as possible. She explained to us that we would need to make our decision before 24 weeks, after which it would be illegal to deliver early because of abortion laws.
David and I were given time in a different room to come to terms with the news before the doctor came to talk with us. We were totally heartbroken and confused. It had all happened so quickly. In hindsight, I can see that there were clues along the way, but we didn't see them that way at the time.
Dr. Andres joined us and talked through some of our options with us. We could deliver within the next few weeks or we could decide to carry the baby. He talked to us about potential complications and about testing they could do to verify the diagnosis (even though, with the cloverleaf skull, there was little question).
I felt very comfortable with Dr. Andres and grateful for his ability to be straightforward about our situation while still showing a lot of concern and kindness. I later learned that his straightforwardness felt abrasive to David. I think this was the first moment that we started experiencing things differently.
David and I quickly decided that we did not want to deliver early and that I would carry the baby as long as I could. We wanted as much time with him as we could have, and David wasn't ready to accept the diagnosis and didn't want to end the pregnancy prematurely if there was any chance that Daniel could be okay. It became very difficult for us to talk about any of it because we felt very differently about it. He felt like we should hold out hope for a miracle and that the diagnosis would be wrong and that Daniel would be healthy. But I didn't feel it. I wondered if there was something wrong with me and if I was lacking faith.
Because of these differences in how we felt about the situation, we struggled to talk about it, which we needed to be able to do.
We had received a flyer for Angel Watch, and I knew that talking to them would probably be good for us, but I couldn't pick up the phone and call. It was scary to invite strangers to come talk to us about this situation that was so raw and difficult. I told people I would call, but I didn't. My mom encouraged me to call. Our medical team encouraged us to call. I said I would, but I never did. Finally, one of my nurses or a social worker (I can't remember who it was—maybe Amelia) asked me if she could give Angel Watch my phone number, and I said yes.
I think it was Kay who reached out and made an appointment to come visit with us in our home. A few days later, she and Suzie came. All of my hesitation evaporated when they came, because there was an immediate sense of their love and care for us, even though they didn't know us. They didn't know us, but they knew what we were going through very well, and they knew just what to say. They were so very sensitive, kind and wise. They helped us break down the barriers between the two of us and be able to discuss our situation and make the necessary plans.
I remember Kay telling us that this situation would make us different, and that as a couple, it could either push us apart or draw us closer to each other, and that we got to choose. She was the person who introduced to us the phrase "You can do hard things."
Suzie was always so gentle in her demeanor. She spoke so softly and tenderly and always expressed her willingness to help us in any way she could.
I think our meetings were weekly, and Kay and Suzie quickly became dear friends. When the time for delivery neared, they scheduled a meeting with our hospital team so that we could all have clear expectations and so that the hospital experience could be as good as possible. Suzie made sure she would be scheduled to work on the day of my delivery so she could be there with us.
The day of Daniel's birth was so special. So hard, but so beautiful, too. The c-section took longer than anticipated and there were some complications because he was so big. There were a few moments I was a little afraid I wasn't going to be okay. But everyone stayed calm and supportive and everything was okay. After Daniel was cleaned up a little, he was wrapped up and brought to me so I could be with him while they finished the surgery.
One very special moment in the OR was when Suzie came to me and looked me right in the eyes and said, "You are a very special mother." I'll never forget the love she had for us and for Daniel.
Angel Watch continued to support us in the weeks following Daniel's birth. I remember Suzie coming over to deliver our precious bear made from Daniel's hospital blankets. We cherish that bear and still use it in our family pictures and pass it around at Christmas time to include Daniel in our family time.
Over the years we have had the opportunity to connect with other Angel Watch families. Soon after Daniel's birth, I was put in touch with other mothers of babies with thanatophoric dysplasia, and even though I felt so awkward when we first met (I was only a few weeks out from my loss and not feeling at all socially normal), those women became dear friends.
We have always enjoyed attending the yearly Angel Watch remembrance ceremonies. It's so wonderful to gather with other families who have had similar experience. My heart breaks every year to see the new Angel Watch families whose pain is still so raw. I hope that being together gives them hope that they can find their way through this new reality they never wanted. But no matter where anyone is on their path through this experience of loss, there is always one thing that everyone has in common, and that is the reverence and love that we all have for Angel Watch. I truly do not know if we could have made it through that experience in such a positive way without Angel Watch.
We needed you, and you were there. I wish every family that faces this kind of loss could have what we had. I'll never forget it and I'll never take for granted how much you helped us and I will take any opportunity to care for other families and mothers the way we were cared for.
Thank you.
With love,
The Millers
Emily, David, Charlie, Sammy, Ada, and angels Daniel (5/10/11) and Aaron (5/22/20)
