And there he was. My sweet baby boy. My BIG baby boy! Babies with TD are generally quite small, and I was expecting him to be maybe 5 pounds. My Daniel was 10 pounds! He had short arms and legs, but he was a big boy.
"Oh, sweet boy," I said.
My doctor took him to the nurses to be quickly cleaned and wrapped in his blankets, before giving him to David to bring to me. We held him between us while David sang to him the songs that he had sung to him before his birth. We hoped hearing his daddy's familiar voice would bring him comfort.
David asked if someone could please get my father, to come and assist in giving Daniel his name and blessing, a special religious rite that we were thankful to have time for while he was alive, and thankful that the hospital would bend the rules enough for us to invite my dad to be there.
After his blessing, Daniel was given back to me, and one of my nurses helped me to wrap my arms around him (I was still in surgery). I remember putting my forehead to his. He was so still and peaceful. I just hoped that he could feel how much his mother loved him. So much.
It was during this time that I had a feeling that his spirit had left his little body, though there was no obvious physical change, as we could not detect his breathing while he was alive. I didn't know for sure, but there was a moment when I just had a feeling that his spirit had passed on. I didn't say anything. I just held him and loved him.
If I'm remembering correctly, David took Daniel back to the nurses to see if there was anything we should be doing differently. If we should be holding him differently, etc. At that time, one of my nurses came over to me and looked me straight in the eyes, deeper than anyone has probably ever looked right into my eyes. She had tears, and she bent down to put her forehead on mine.
"You are a beautiful, special mother," she said.
My surgery was finished and they began to wheel me toward the door. David had been with the nurses, and he brought Daniel back to me. I asked him, "Is he still breathing?" There was a hush in the room as he and the neonatologist told me that, no, he wasn't. He had passed away in my arms. David bent over and put his face on mine while we cried. I glanced around the room and saw everyone else perfectly still and perfectly silent.
The records say Daniel lived for 32 minutes. We had hoped for more time, but we were so thankful we had at least a little time with him.
Thursday, August 11, 2011
Daniel's story, before his birth
On January 6, 2011, my little family joined me at my doctor's office for what we believed would be a standard ultrasound. After trying to conceive for about three years, I was finally pregnant. I was 19 weeks along and we were all anxious to know if it was a baby brother or a baby sister. My husband, David, had a feeling it was a boy, but our 4-year-old son, Charlie, was certain it was a boy.
"Is it a brother?" Charlie asked when the sonographer indicated it was time to find out. I remember feeling so happy when she told us that, yes, it was a boy. I'm sure I would have been just as happy to find out it was a girl, but knowing a little more about our baby's identity was thrilling either way. I was so excited, and so happy that Charlie would have his baby brother.
But as the ultrasound went on, I could tell that our sonographer was concerned about something. My untrained eye could only see that his forehead looked large. She spent a lot of time looking at his chest, so when she told us that his heart looked good, I was so relieved.
As she wrapped things up, she put her tools down. The moment is recorded in my mind when she said, "I've got to be honest, you guys. I have some concerns."
She told us that our baby's long bones (arms and legs) were alarmingly short and she was concerned about the shape of his head. She said there was a good chance that he had some type of dwarfism. She told us she would get us a room to wait in so that we wouldn't have to go back to the waiting room to process this news while she was talking with the doctor.
As we sat, waiting for the doctor, I remember saying, "I love my boys... all three of them."
"I love my boys" is a phrase I use a lot, usually when I am observing a sweet moment between David and Charlie. Although I was surprised by the news from the ultrasound, I was feeling very happy to add another boy to the family.
When it was time to speak with my doctor, he told us we would need to see a specialist to learn more about our baby's condition. He said there were hundreds of types of dwarfism (a.k.a. skeletal dysplasia), and that some of them were lethal conditions. That possibility hadn't even occurred to me, but I didn't feel too worried. I felt that the chances of it being something that serious seemed so slim, that I wouldn't dwell on that possibility. We would just hope that if he did have dwarfism, that he would be healthy. We knew we would have to learn a lot about it and that it would affect our lifestyle in a big way, but we would wholeheartedly embrace that scenario.
The nurse was able to schedule an appointment for us with a specialist the very next day.
I remember coming home that night, standing in my kitchen and looking around, knowing that everything had just changed. My whole world looked different, even in familiar surroundings.
On January 7, 2011, we dropped Charlie off to play with some friends while we went to find out more about our boy. At our appointment with the maternal-fetal specialist, one of the first things the sonographer told us was that the baby appeared to have a cloverleaf skull. This was a term I had come across in the information I had found online the night before, and I knew that it was associated with thanatophoric dysplasia, a lethal condition. So hearing that our boy appeared to have it caused me to really worry for the first time.
Later, we talked with the doctor and a genetic counselor. They both suggested that it could be thanatophoric dysplasia, but that they couldn't be sure without further testing. They left us alone in the little conference room and gave us time to let it sink in.
When we left, I called my mom right away. I told her it didn't look good. She and my dad packed their things as quickly as they could, and they drove the three hours to our home to be with us.
The next morning, a Saturday, I got up before everyone else. I couldn't sleep anymore. I got online to learn more about the different types of dwarfism to compare the characteristics to what we knew about our boy.
My heart sank when I learned that dwarfism with a cloverleaf skull was associated only with thanatophoric dysplasia, type 2. If my baby really had a cloverleaf skull, as they thought he did, he was going to die and there was nothing anyone could do about it.
I remember that morning, feeling like I was the only woman in history to receive this kind of news. I wondered how I could do it. How could I survive the next four months of pregnancy knowing that my baby was going to die?
What I knew was that as long as my baby was inside me, he was okay. That continuing the pregnancy meant I could very likely go to full term. That when he was born, he would probably die within a few hours - a day or two if we were lucky. Because of the likely diagnosis, his chest would not grow large enough to allow adequate lung development. When he was born, his lungs would not have the size or maturity to support life, even with a respirator.
But as long as I was breathing for him, he was okay.
Terminating my pregnancy was not an option for me. I felt very strongly that it would be in God's hands and I would do what I could to preserve my precious, prayed-for child as long as I could.
David and I chose to postpone genetic testing for a while. We knew the official diagnosis wouldn't make a difference to whether or not I continued the pregnancy. If we were going to do the testing at all, we would wait until the last few weeks. It was our way of maintaining some hope that the suspicions were wrong and that our boy would be okay. Knowing for sure that he was going to die seemed like it would make the remaining months of my pregnancy even harder. But I'm not sure we were right about that. The uncertainty was very hard, too.
I don't remember how far along I was when I had my amniocentesis, but it was past 30 weeks. It took several days longer than we expected to hear the results, which actually made me feel hopeful that it wasn't what they suspected, and that they were running more tests.
It was a late afternoon in April when I answered a call from one of our genetic counselors. He confirmed to me that, yes, our little boy had thanatophoric dysplasia, type 2. I held it together okay on the phone. This wasn't unexpected. I had been preparing to hear this news for three months.
But the minute I hung up the phone, I felt the worst emotional pain I had ever experienced. For the first time in my life I felt like I really knew what it meant to feel my heart breaking. I called David at work and asked him to come home.
The news hit him like a ton of bricks. In the months since we had first learned about Daniel's dwarfism, David and I had handled the situation very differently. I felt like I had accepted the probability of TD and was working my way through some of the grieving, even before the baby was born. I tried to have hope, but for me that hope was believing that everything was part of a bigger plan and that we would be okay, even stronger, from this experience. I have to admit that I did not feel hope that Daniel would survive, as much as I wished I could feel it.
But David could. He maintained hope that our baby was going to be okay. We knew he would be different and have special needs if he survived, but David believed he would be okay, even by a miracle.
When he heard the confirmation of thanatophoric dysplasia, it knocked him over. He had been so hopeful for so long despite the suspicions. And in an instant, it was gone. He had to start again, on a new path with new information.
This whole time, Charlie was such a comfort to us. When we first told him that his baby brother might go back to Heaven, Charlie was very upset. He said that he wanted his brother here, and that it wasn't okay for Heavenly Father to take him back. It broke my heart for my little boy to have to learn about death and process all of this at such a young age. And I even felt like I had done something wrong and that I was taking his little brother away from him somehow. I felt sad for him that he wouldn't have a playmate. Someone to grow up with. Someone to be grown up with. And I felt sad for myself that I wouldn't get to see Charlie being a big brother in the typical way.
But Charlie has a big, resilient spirit. He seemed to come to an understanding and acceptance of the situation, and became our little sadness police. Whenever he would hear me or anyone crying, he would come to the rescue with lots of tickling. (In fact, he just did it again as I was writing this.) He told us that it was okay, and that "our baby" would be with Heavenly Father and Jesus. He told us he wasn't sad about it. Without prompting, Charlie chose a blanket of his that he wanted to give to his baby brother.
We did what we could to make memories with our baby while he was still with us, in my belly. Our most notable outing was to the zoo. We took lots of pictures, bought some keepsakes to put with his casket, and talked about him a lot, hoping that Charlie would remember this time "with" his baby brother.
We asked a good friend if she would do some family pictures for us before the baby came. What could have been a somber photo session, wasn't. It was fun and joyous, and the photos she took will always be some of our most treasured.
When I was 34 or 35 weeks along, we went back to see our specialists (as we had many times at this point). We learned that our baby's head was measuring very large, and that if we didn't deliver soon, it was potentially dangerous to me and definitely to future pregnancies because of the chance of a more complicated surgery (a regular delivery was not an option because of his head size). We knew that he would have a large head, but the news that it was larger than we even knew and growing quickly was a surprise.
Our doctor gave her recommendation, and then left the decision with us for when our baby would be born.
I felt, very much, like this was not a decision I should have to make. No one should. Choosing a date for my baby's birth was also choosing a date for my baby's death. It was so heavy. Ultimately, we decided to push the limits of what my doctor had suggested, and deliver on May 10 at 37 weeks.
Not only did we have to decide when it would happen, but we had to decide what interventions, if any, would be used to prolong his life. We learned of a handful of cases in which a baby with thanatophoric dysplasia actually survived (even though the diagnosis is "incompatible with life"). This information made our decision very difficult. We knew the odds were against our baby surviving, but knowing that it had happened meant that we had to think very seriously about what interventions we would request.
We were so, so torn on this. It was so hard to talk about, and so difficult to know what the right choices were. On one hand, we wanted to do whatever we could to help him live. But our biggest fear was that our baby's short life would be filled with painful urgency instead of the peace and love of just being held and comforted by his parents. I was so scared that I wouldn't get to hold him while he was alive because he might die while the doctors were trying to save him.
How could we make this decision when we didn't know how it would turn out? We had to put our trust in God, and ask him to help us make the best decision, and then to trust ourselves with it.
We chose to give him a nasal cannula with oxygen. This felt like the best choice, as it would help him breathe if he could, and we could still hold him and love him.
The people we worked with at the hospital were amazing. They, and an organization called Angel Watch, helped us coordinate everything to our wishes for our baby's delivery. They were all so sensitive to our situation and very loving to our family. They helped make a very hard situation just a little easier, knowing that it would be handled the way we wanted.
On May 10, David and I got out of bed early after not sleeping much. We had to be at the hospital at 6 a.m. We shared some special thoughts and prayers on our way and in the parking lot of the hospital. I remember, so clearly, walking into the hospital that morning, knowing that when I walked back out those doors, my life would be forever changed.
In my room on the L&D floor, I was prepped for surgery. During that time, the baby's heartbeat and my contractions (which were surprisingly close and big that morning) were being monitored. I remember listening to his strong, healthy heartbeat, knowing it wasn't going to last much longer. My sweet baby boy, who I wanted so much, was almost here and almost gone again.
Sometimes I wonder how I walked to the operating room on my own two feet. How did I do it? I don't know, except that I was blessed with a calmness that morning.
In the operating room, I remember feeling so calm. So relaxed. I didn't feel the nerves that I expected to. Just peace. What a blessing.
The surgery took longer than I expected because his head was stuck (he was breech, and his head was up by my ribs). I remember saying a silent prayer, asking my Heavenly Father to please bless my doctors that they could deliver him and keep me safe. Shortly after my prayer, I felt his head finally come loose. I turned to David to tell him. I said over and over, "Here he comes. Here he comes," until I heard my doctor say my name. I turned my head toward her voice.
"Here's your baby," she said.
"Is it a brother?" Charlie asked when the sonographer indicated it was time to find out. I remember feeling so happy when she told us that, yes, it was a boy. I'm sure I would have been just as happy to find out it was a girl, but knowing a little more about our baby's identity was thrilling either way. I was so excited, and so happy that Charlie would have his baby brother.
But as the ultrasound went on, I could tell that our sonographer was concerned about something. My untrained eye could only see that his forehead looked large. She spent a lot of time looking at his chest, so when she told us that his heart looked good, I was so relieved.
As she wrapped things up, she put her tools down. The moment is recorded in my mind when she said, "I've got to be honest, you guys. I have some concerns."
She told us that our baby's long bones (arms and legs) were alarmingly short and she was concerned about the shape of his head. She said there was a good chance that he had some type of dwarfism. She told us she would get us a room to wait in so that we wouldn't have to go back to the waiting room to process this news while she was talking with the doctor.
As we sat, waiting for the doctor, I remember saying, "I love my boys... all three of them."
"I love my boys" is a phrase I use a lot, usually when I am observing a sweet moment between David and Charlie. Although I was surprised by the news from the ultrasound, I was feeling very happy to add another boy to the family.
When it was time to speak with my doctor, he told us we would need to see a specialist to learn more about our baby's condition. He said there were hundreds of types of dwarfism (a.k.a. skeletal dysplasia), and that some of them were lethal conditions. That possibility hadn't even occurred to me, but I didn't feel too worried. I felt that the chances of it being something that serious seemed so slim, that I wouldn't dwell on that possibility. We would just hope that if he did have dwarfism, that he would be healthy. We knew we would have to learn a lot about it and that it would affect our lifestyle in a big way, but we would wholeheartedly embrace that scenario.
The nurse was able to schedule an appointment for us with a specialist the very next day.
I remember coming home that night, standing in my kitchen and looking around, knowing that everything had just changed. My whole world looked different, even in familiar surroundings.
On January 7, 2011, we dropped Charlie off to play with some friends while we went to find out more about our boy. At our appointment with the maternal-fetal specialist, one of the first things the sonographer told us was that the baby appeared to have a cloverleaf skull. This was a term I had come across in the information I had found online the night before, and I knew that it was associated with thanatophoric dysplasia, a lethal condition. So hearing that our boy appeared to have it caused me to really worry for the first time.
Later, we talked with the doctor and a genetic counselor. They both suggested that it could be thanatophoric dysplasia, but that they couldn't be sure without further testing. They left us alone in the little conference room and gave us time to let it sink in.
When we left, I called my mom right away. I told her it didn't look good. She and my dad packed their things as quickly as they could, and they drove the three hours to our home to be with us.
The next morning, a Saturday, I got up before everyone else. I couldn't sleep anymore. I got online to learn more about the different types of dwarfism to compare the characteristics to what we knew about our boy.
My heart sank when I learned that dwarfism with a cloverleaf skull was associated only with thanatophoric dysplasia, type 2. If my baby really had a cloverleaf skull, as they thought he did, he was going to die and there was nothing anyone could do about it.
I remember that morning, feeling like I was the only woman in history to receive this kind of news. I wondered how I could do it. How could I survive the next four months of pregnancy knowing that my baby was going to die?
What I knew was that as long as my baby was inside me, he was okay. That continuing the pregnancy meant I could very likely go to full term. That when he was born, he would probably die within a few hours - a day or two if we were lucky. Because of the likely diagnosis, his chest would not grow large enough to allow adequate lung development. When he was born, his lungs would not have the size or maturity to support life, even with a respirator.
But as long as I was breathing for him, he was okay.
Terminating my pregnancy was not an option for me. I felt very strongly that it would be in God's hands and I would do what I could to preserve my precious, prayed-for child as long as I could.
David and I chose to postpone genetic testing for a while. We knew the official diagnosis wouldn't make a difference to whether or not I continued the pregnancy. If we were going to do the testing at all, we would wait until the last few weeks. It was our way of maintaining some hope that the suspicions were wrong and that our boy would be okay. Knowing for sure that he was going to die seemed like it would make the remaining months of my pregnancy even harder. But I'm not sure we were right about that. The uncertainty was very hard, too.
I don't remember how far along I was when I had my amniocentesis, but it was past 30 weeks. It took several days longer than we expected to hear the results, which actually made me feel hopeful that it wasn't what they suspected, and that they were running more tests.
It was a late afternoon in April when I answered a call from one of our genetic counselors. He confirmed to me that, yes, our little boy had thanatophoric dysplasia, type 2. I held it together okay on the phone. This wasn't unexpected. I had been preparing to hear this news for three months.
But the minute I hung up the phone, I felt the worst emotional pain I had ever experienced. For the first time in my life I felt like I really knew what it meant to feel my heart breaking. I called David at work and asked him to come home.
The news hit him like a ton of bricks. In the months since we had first learned about Daniel's dwarfism, David and I had handled the situation very differently. I felt like I had accepted the probability of TD and was working my way through some of the grieving, even before the baby was born. I tried to have hope, but for me that hope was believing that everything was part of a bigger plan and that we would be okay, even stronger, from this experience. I have to admit that I did not feel hope that Daniel would survive, as much as I wished I could feel it.
But David could. He maintained hope that our baby was going to be okay. We knew he would be different and have special needs if he survived, but David believed he would be okay, even by a miracle.
When he heard the confirmation of thanatophoric dysplasia, it knocked him over. He had been so hopeful for so long despite the suspicions. And in an instant, it was gone. He had to start again, on a new path with new information.
This whole time, Charlie was such a comfort to us. When we first told him that his baby brother might go back to Heaven, Charlie was very upset. He said that he wanted his brother here, and that it wasn't okay for Heavenly Father to take him back. It broke my heart for my little boy to have to learn about death and process all of this at such a young age. And I even felt like I had done something wrong and that I was taking his little brother away from him somehow. I felt sad for him that he wouldn't have a playmate. Someone to grow up with. Someone to be grown up with. And I felt sad for myself that I wouldn't get to see Charlie being a big brother in the typical way.
But Charlie has a big, resilient spirit. He seemed to come to an understanding and acceptance of the situation, and became our little sadness police. Whenever he would hear me or anyone crying, he would come to the rescue with lots of tickling. (In fact, he just did it again as I was writing this.) He told us that it was okay, and that "our baby" would be with Heavenly Father and Jesus. He told us he wasn't sad about it. Without prompting, Charlie chose a blanket of his that he wanted to give to his baby brother.
We did what we could to make memories with our baby while he was still with us, in my belly. Our most notable outing was to the zoo. We took lots of pictures, bought some keepsakes to put with his casket, and talked about him a lot, hoping that Charlie would remember this time "with" his baby brother.
We asked a good friend if she would do some family pictures for us before the baby came. What could have been a somber photo session, wasn't. It was fun and joyous, and the photos she took will always be some of our most treasured.
When I was 34 or 35 weeks along, we went back to see our specialists (as we had many times at this point). We learned that our baby's head was measuring very large, and that if we didn't deliver soon, it was potentially dangerous to me and definitely to future pregnancies because of the chance of a more complicated surgery (a regular delivery was not an option because of his head size). We knew that he would have a large head, but the news that it was larger than we even knew and growing quickly was a surprise.
Our doctor gave her recommendation, and then left the decision with us for when our baby would be born.
I felt, very much, like this was not a decision I should have to make. No one should. Choosing a date for my baby's birth was also choosing a date for my baby's death. It was so heavy. Ultimately, we decided to push the limits of what my doctor had suggested, and deliver on May 10 at 37 weeks.
Not only did we have to decide when it would happen, but we had to decide what interventions, if any, would be used to prolong his life. We learned of a handful of cases in which a baby with thanatophoric dysplasia actually survived (even though the diagnosis is "incompatible with life"). This information made our decision very difficult. We knew the odds were against our baby surviving, but knowing that it had happened meant that we had to think very seriously about what interventions we would request.
We were so, so torn on this. It was so hard to talk about, and so difficult to know what the right choices were. On one hand, we wanted to do whatever we could to help him live. But our biggest fear was that our baby's short life would be filled with painful urgency instead of the peace and love of just being held and comforted by his parents. I was so scared that I wouldn't get to hold him while he was alive because he might die while the doctors were trying to save him.
How could we make this decision when we didn't know how it would turn out? We had to put our trust in God, and ask him to help us make the best decision, and then to trust ourselves with it.
We chose to give him a nasal cannula with oxygen. This felt like the best choice, as it would help him breathe if he could, and we could still hold him and love him.
The people we worked with at the hospital were amazing. They, and an organization called Angel Watch, helped us coordinate everything to our wishes for our baby's delivery. They were all so sensitive to our situation and very loving to our family. They helped make a very hard situation just a little easier, knowing that it would be handled the way we wanted.
On May 10, David and I got out of bed early after not sleeping much. We had to be at the hospital at 6 a.m. We shared some special thoughts and prayers on our way and in the parking lot of the hospital. I remember, so clearly, walking into the hospital that morning, knowing that when I walked back out those doors, my life would be forever changed.
In my room on the L&D floor, I was prepped for surgery. During that time, the baby's heartbeat and my contractions (which were surprisingly close and big that morning) were being monitored. I remember listening to his strong, healthy heartbeat, knowing it wasn't going to last much longer. My sweet baby boy, who I wanted so much, was almost here and almost gone again.
Sometimes I wonder how I walked to the operating room on my own two feet. How did I do it? I don't know, except that I was blessed with a calmness that morning.
In the operating room, I remember feeling so calm. So relaxed. I didn't feel the nerves that I expected to. Just peace. What a blessing.
The surgery took longer than I expected because his head was stuck (he was breech, and his head was up by my ribs). I remember saying a silent prayer, asking my Heavenly Father to please bless my doctors that they could deliver him and keep me safe. Shortly after my prayer, I felt his head finally come loose. I turned to David to tell him. I said over and over, "Here he comes. Here he comes," until I heard my doctor say my name. I turned my head toward her voice.
"Here's your baby," she said.
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