Well, we got pregnant once more. We were excited and nervous. We had all the same tests as before but this time we were also seeing the perinatal specialist for regular fetal scans from early on.
With this disorder, you can't really tell anything is going well or going wrong until the bone growth takes off around 16+ weeks. That's typically the earliest you start to see some indictation of things going right or wrong. So I had to spend long months experiencing all the things of pregnancy, the morning sickness, the breast tendernous, the tiredness. All of that for months and months without knowing if things were going to work or not.
I was consumed with worry and dred from the beginning. Always nervous. I often cried. I even stayed on my antidepressants for a while to try to help. I tried to keep living, going on day to day caring for my daughter, trying to keep things regular and normal for her. We ended up telling both our families early on that we were pregnant again because I wanted the prayers. I needed them. Interestingly enough, it was our church ministers who we told first. We took solace in knowing we weren't alone. The senior minister at our church told us when we'd lost Noah that he and his wife had lost their first child full term. We encountered more and more people with similar background, different types of losses of course, but still losses.
I'd joined a loss support group after Noah. And ladies, I will warn you know...some people in those loss groups change after you get pregnant again. Suddenly you aren't one of them, even though you have so far to go and are not out of the woods yet. I had a very dear friend I made through the group and she never quite came to terms I think with the fact I was finally able to have another healthy child. And I don't fault her for that. If I had not been able to have Olivia, I probably would have been stuck in that same rut of pain and loss.
And not everyone understands. Shortly before Noah was delivered, but after we knew things were desperately wrong, we were supposed to go a baby shower for some friends back home. Or rather I was, it wasn't a couples thing. We got a lot of resentment because I bowed out. I couldn't take it. The thought of being there and trying to be all happy and excited for someone else, someone about to birth their first baby when all I wanted to do was cry and worry about my baby and how I was likely to lose him soon. I was in no frame of mind to celebrate anything. And people thought I was selfish. Maybe I was. But how can you really expect me to go and sit there while you oooh and ahhh over all your adorable little boy clothes when I know in a matter of weeks or days my child, the child in my belly, might be dead. I am sorry. I couldn't do it. I truly think it's one of those things that unless you've walked in those shoes, you don't know what it's like.
I didn't want to see anyone else's baby. I didn't care how cute they were. None of it mattered. It only reminded me more of all I'd lost or was about to maybe lose.
The months waiting were agonizing. We prayed. We prayed hard. Through it all I said I'd never do it again. If something happened and something were wrong with this baby, I was done. I couldn't go through it again. It was just too hard emotionally and physically. By this point I felt like I'd been pregnant two years. Between the first miscarriage and then Noah and then now being pregnant with Christina I was constantly in a stage of pregnancy or recovery or about to become pregnant.
Early fetal scans showed things not looking great. Measurements were off. We even went to my parent's church, a place we got married, to have a laying on a hands (our church didn't do that.) I was desperate. Anything I could try I would.
In the end, the worst happened and on August 14, 2003, Christina Ann Painter was stillborn in the same Richmond hospital her older brother had been nearly a year before. It wasn't the same room. As before, we got to hold her tiny body, take pictures, have some family there to hold her fragile litte body and say their own goodbyes. We elected to donate her remains to the International Skeletal Dysplasia Registry at Cedars Sinai like we did with Noah. And we had a memorial for her at our church after.
We were devastated once again and for a while, I thought my heart would never recover. Being around other babies was even worse than before. I didn't want to hear them, see them, smell them. Nothing. Everything reminded me of the precious babies I'd lost. I felt myself withdrawing more and more.
And then I kept on coming back to something miraculous that had happened at the hospital with Christina. I remember crying as they once more hooked me up to the machines, pumping medicine into my veins that would eventually make me deliver her. I remember being so upset and distraught one moment and then in the next, suddenly having this peace. Out of no where, this peace settled over me and I suddenly just knew that if I tried one more time it would be ok.
NEVER ever had it been in my plans to try again. During the entire 21 weeks of Christina's pregnancy I swore I would never do it again. If the worst happened, either we'd settle with one child or possibly look to adopt. And if we adopted it would have to be internationally because I could not stomach the possibility of someone coming to my house to take a baby from me because they'd changed their mind. I could not handle another loss. If we had more children, it would have to be adoption.
So never, never ever had I thought of trying again and suddenly I had this knowledge, this feeling that if we tried one more time it would be ok. The induction process that early on is a rather lengthy one (around 24hrs) and so we saw a parade of doctors from my ob and the perinatal specialists, 6 of them in all...I remember them coming in at various times but all saying the same thing. "If you can bear to try one more time, the odds are with you."
Each time another doctor came on duty and told me that, it stuck in my mind. Someone was trying to tell me something. Another and another and another, hammering home the point. It would be ok.
After Christina, I just knew...early on...I needed to try again. Derek needed more convincing. He wasn't so sure. He was hurting badly and didn't know if he could go through it again. And there just wasn't us to consider, but also our families and friends who had to ride this roller coaster with us. Going through the uncertainty and loss is almost too much to bear.
But I knew...I knew I would never have peace unless we tried. Derek took a leap of faith, believing in me and my convictions. As soon as we could try to conceive after Christina, the very first time, we got pregnant. And from the beginning it felt better. I had so much more hope and peace. Yes, I had moments or worry and concern and doubt, but I just felt better.
I still remember...when we were really early on....having Christmas at my parent's house. I was helping my mother get some linens out for Christmas Eve dinner the next day and she was talking to me about how we were holding up and if we thought we might consider adopting one day, or if we were done. Just talking really. And I was saying I didn't know, we'd just have to see. My mom was kneeling by a buffet, getting a table cloth out of the bottom drawer and she suddenly looks up at me and asks, "Are you pregnant?"
I was stunned and my look of stunned disbelief must have been answer enough, because her immediate response was, "Oh..good." She said she didn't even know why she'd asked if I was pregnant, as it popped into her head she just blurted it out, even though she'd never even considered it a possibility before. And her initial reaction was happy and good instead of fear and dread. I guess even then somehow we knew.
Derek and I moved from Richmond to Charlotte during the middle of that pregnancy. It was hard and sad to leave my trusted doctors, but we stayed just long enough to get through the critical weeks and scans, confirming that everything was looking ok. They wanted so badly to see me through to completion, to see that happy ending, but were happy to know things were looking up when I had to leave. One more scheduled ultrasound once in Charlotte to confirm things were still looking up and then we felt it was ok to finally breathe. Well...sort of. I never really relaxed totally until she was delivered safely and I could hold her in my arms and see and hear for myself she was really ok. And she was. Our beautiful little Olivia Nicole. Born August 2, 2004, just shy of the 1 year anniversary of losing Christina.
People ask how I did it. How could I bear to try again after all those losses? How could I manage? I know for certain, I could not have done it alone. God's grace helped me through it. He gave me the strength I needed. I know HE was there in the miracle of peace and knowledge that came over me in the hospital that day. A day and time I was facing another crushing loss. A day, like so many other before, I'd sworn I was done. I'd never be pregnant again. I simply couldn't take it again. It was too much to bear.
And yet...with HIS guidance, my world changed and a new blessing came into my life. My youngest daughter. And as crazy as it sounds, I would not change any of it. As horrible as those losses were and are, they made me who I am today and I can promise you I am a much better person for it.
Showing posts with label Asphyxiating Thoracic Dysplasia. Show all posts
Showing posts with label Asphyxiating Thoracic Dysplasia. Show all posts
Sunday, October 12, 2008
The time after Noah
I cried alot. I cried often. And at first, because I didn't want my husband to see how much I was hurting and get upset too, sometimes I even hid the extent of my grief from him. I realized early on though, that that wasn't doing either of us any favors. We needed to share in our grief. Yes, we each dealt with it in our own ways, but we both needed to see and feel the depth of each other's grief.
It was hard having a three year old to care for. It was hard trying to hold it all together when I just wanted to break down and cry so many times. Some people questioned how much she'd understand and know, but she was closer to four than three and she understood alot. Alot more I think than people gave her credit for. We were told to give her a high level reason for why her baby brother died. But also to be specific. We didn't want her thinking that people died when going to the hospital or doctor or that she could just suddenly die in her sleep either (if we said the baby just went to sleep in mommy's tummy and didn't wake up.) We were cautioned to be realistic without going into to much detail and so we ended up telling her Noah died because his lungs were broken. That the doctors tried to fix them but they couldn't and so he died. But we were quick to reassure her that her lungs and Mommy and Daddy's and everyone else's were fine too.
She had some questions naturally. Like why couldn't Jesus fix Noah's lungs? Why couldn't Noah come back alive like Jesus did? It's hard to explain about miracles and hope and faith under those circumstances.
I'll never forget a couple weeks later when I was having one of my usual sad times and was awake, but laying down in our bed, just having a bit of quiet. She came in to the room and went right to the window and pulled up the blinds, I watched as she peered up from under them, looking up into the darkening sky. This little three year old, who so many people thought didn't really get it or understand, proceeded to say, "Star lite, star bright, first star I see tonight, I wish I may, wish I might, have this wish I wish tonight. I wish Noah could come back and that his lungs wouldn't be broken and that he could be here and Mommy and Daddy could be happy again." It was one of the most beautiful and sincere things I'd ever heard and while it broke my heart to hear her making such a request, it touched it as well. How sweet and amazing was my little girl to make a wish like that! And then I had to sit up, crying by now, and call her to me, trying to explain that while wishing on stars is great and fun and wonderful, sometimes those wishes just can't come true.
Hard times.
Eventually we got the results from Noah's autopsy at Cedars Sinai and they confirmed what we had suspected. He had, as best as they could tell, Asphyxiating Thoracic Dysplacia. Well, at least we had a name for it now. And with a name we found that my husband and I were each apparently recessive carriers for his bizarre disorder and that one in every four pregnancies had a chance of this occurring for us again. 1 in 4. That's still 75% chance of a healthy baby. If someone told you that you had a 75% chance of winning the lottery, most of us would probably go by a ticket. The doctors and specialists further told us that the chances of it occurring back to back was 1 in 16. So, theoretically, the chances were even greater we could have a healthy baby the next go round. Yes, it was still a 1 in 4 chance, but back to back was 1 in 16.
After much prayer and thought and discussion, we decided to try again once we got the clear for trying from my OB.
Pretty much as soon as we could get pregnant, we did. This time with Christina. And so, another chapter unfolds....
It was hard having a three year old to care for. It was hard trying to hold it all together when I just wanted to break down and cry so many times. Some people questioned how much she'd understand and know, but she was closer to four than three and she understood alot. Alot more I think than people gave her credit for. We were told to give her a high level reason for why her baby brother died. But also to be specific. We didn't want her thinking that people died when going to the hospital or doctor or that she could just suddenly die in her sleep either (if we said the baby just went to sleep in mommy's tummy and didn't wake up.) We were cautioned to be realistic without going into to much detail and so we ended up telling her Noah died because his lungs were broken. That the doctors tried to fix them but they couldn't and so he died. But we were quick to reassure her that her lungs and Mommy and Daddy's and everyone else's were fine too.
She had some questions naturally. Like why couldn't Jesus fix Noah's lungs? Why couldn't Noah come back alive like Jesus did? It's hard to explain about miracles and hope and faith under those circumstances.
I'll never forget a couple weeks later when I was having one of my usual sad times and was awake, but laying down in our bed, just having a bit of quiet. She came in to the room and went right to the window and pulled up the blinds, I watched as she peered up from under them, looking up into the darkening sky. This little three year old, who so many people thought didn't really get it or understand, proceeded to say, "Star lite, star bright, first star I see tonight, I wish I may, wish I might, have this wish I wish tonight. I wish Noah could come back and that his lungs wouldn't be broken and that he could be here and Mommy and Daddy could be happy again." It was one of the most beautiful and sincere things I'd ever heard and while it broke my heart to hear her making such a request, it touched it as well. How sweet and amazing was my little girl to make a wish like that! And then I had to sit up, crying by now, and call her to me, trying to explain that while wishing on stars is great and fun and wonderful, sometimes those wishes just can't come true.
Hard times.
Eventually we got the results from Noah's autopsy at Cedars Sinai and they confirmed what we had suspected. He had, as best as they could tell, Asphyxiating Thoracic Dysplacia. Well, at least we had a name for it now. And with a name we found that my husband and I were each apparently recessive carriers for his bizarre disorder and that one in every four pregnancies had a chance of this occurring for us again. 1 in 4. That's still 75% chance of a healthy baby. If someone told you that you had a 75% chance of winning the lottery, most of us would probably go by a ticket. The doctors and specialists further told us that the chances of it occurring back to back was 1 in 16. So, theoretically, the chances were even greater we could have a healthy baby the next go round. Yes, it was still a 1 in 4 chance, but back to back was 1 in 16.
After much prayer and thought and discussion, we decided to try again once we got the clear for trying from my OB.
Pretty much as soon as we could get pregnant, we did. This time with Christina. And so, another chapter unfolds....
Monday, October 6, 2008
My story
Hmm, where do you begin with something like this? How do you begin? Even now, nearly 6 years later, my eyes well up as I think about all I've gone through and all I've lost. Losing a child is an experience that changes you forever. There is no forgetting. There is no getting over it. And honestly, you don't want to. From the moment you know you are pregnant that child forever changes your life, their whole life seems to flash before your eyes as you imagine everything they could do and become. And when that is suddenly gone, when in the blink of an eye it all vanishes, it is not something you just 'get over."
My husband and I were blessed to have one healthy child before any of our problems began. We had no clue how lucky we really were or how easily something could go wrong. Oh, we loved our daughter for sure, more than anything, we were just blissfully ignorant about the struggles and devastation that others had to endure.
Our lives forever changed when I was about 19 weeks along with our second child (though we'd had one early miscarriage between the two.) Everything in the pregnancy had gone well, the AFPS, the screenings, everything had been normal and just like you'd want it to be. We had no inclination that anything was wrong and so went to our routine ultrasound halfway through the pregnancy with hopeful hearts and expectant eyes. We even had our three year old with us because she was eager to see if Mommy had a girl or boy in her tummy. All through the ultrasound things looked great, at least to our uneducated eye. The baby, a boy, had two arms and two legs, all the fingers and toes were there, the heart was beating nice and strong and the little guy was just swimming around, kicking and moving like you'd expect a healthy baby to be doing. Everything seemed so great. We are ecstatic to have a son on the way. Derek couldn't have been prouder. What man doesn't want a son to carry on his name?
And then, since little three year old girls are squirmy and impatient, he took her off to go to McDonalds and play while Mommy waited for her regular Dr. visit and the official ultrasound review. Again, never dreaming in our wildest dreams anything was wrong.
I still will never forget the Dr. coming in to the room, the dull fluorescent light beating off the white painted cinder block walls, me sitting on the end of the examine table, swinging my feet back and forth as I felt the baby move inside me, still doing somersaults. I was happy and ready with a smile when the Dr. came in, clipboard in hand. To her credit, she never really let me see the panic she must have been feeling in those moments. Or the dread. After the cursory how are you, how are you feeling today things, she said there were a couple of things that showed up on the ultrasound that were of concern. My smile faded and I felt like I suddenly couldn't breathe. What do you mean 'of concern?'
She went on to point out that the baby's femurs (upper thigh bones) were measuring a little small and there was some sign of fluid in the kidneys. Already I was freaking out, what does that mean?! It meant that there was an increased chance of Downs, though she was quick to reassure me that maybe it wasn't, maybe it was just a fluke since the AFP and other tests had all come back normal, showing low risks of just that. I wasn't over 35, so many of the things you'd be concerned about simply weren't there.
All the while I am doing my best not to cry, to try to stay calm even though my heart was breaking and I wanted to scream. No! This can't be right! This can't be happening! My baby is fine! My son is fine!
They scheduled me to have a fetal scan (really long ultrasound) the next day with a perinatal specialist and meet with a genetic counselor (something you had to do when meeting with the perinatal specialist.) I managed to hold it together until I got outside and opened the car door. I lost it was soon as I did and let out the most heart wrenched cry/sound I've ever uttered in my life. I can't explain it, I just couldn't control it. I started crying hysterically as soon as I got in the car, completely freaking out and panicking my husband who didn't know what just hit him. I tried to explain through my uncontrolled sobs, I couldn't even mask the pain and fear from my daughter in the backseat. It was just too painful. Too unexpected.
We get home and I somehow manage to tell my husband what was said at the Dr.'s office. We are devastated. Everything, the life we'd imagined for our child is changing before our eyes. But through it all, as bad as it was, as unnerving, we somehow managed to console ourselves. Even if it was Downs at least he looked healthy, his heart looked strong, he was moving and active, he had two arms and legs, fingers and toes. If something was wrong, if he had Down's, it would still be ok. We could manage. We'd take our son in whatever form God gave him to us. They were probably wrong because he looked just fine to us and all the earlier tests had been negative, but if he did have Down's, it would be ok. We did a lot of praying and crying that night, but in the end...felt hope. The worst we'd hear the next day was that he had Down's and it would be ok. Everything would be ok.
The next day, scarcely able to breathe, we went for the fetal scan, all along thinking it was some mistake soon to be rectified. The fetal scan was long, and all during the time it was being done and the technician was telling us which bone she was measuring, the flow of the blood, the placenta, all of it...we kept thinking it was all some horrid mistake. Our son looked beautiful and healthy, moving and kicking and squirming, the heart beating so strongly. My husband and I exchanged more than one look, thinking in our hearts it was all fine. He looked great.
Of course the technician was not allowed to tell us anything, other than what she was measuring. And again, to her credit, she never let on anything was wrong and so we were utterly unprepared for the Dr. when he came in (after reviewing the ultrasound images and notes outside) and he picked up the wand and started whizzing it over my rounded belly, saying there were several things of great concern (first shock) and then he uttered that most dreaded of words, one that forever changed my life, "Possibly lethality."
OMG, how was this happening?! What was happening? It was all too fast, too sudden, too shocking. How could this be happening to us, to our precious baby? To a baby we so desperately wanted and loved? To a baby who'd seemed healthy for 19+ weeks?
Naturally, I lost it and started crying amid the Dr.'s apologies for being so abrupt, my husband clinging to my hand as I tried to hold still and let the Dr. point out this bone or that, all things pointing to something majorly wrong. In came the genetic counselors, a room full of virtual strangers all talking and staring at the screens while the wand passed over my shaking belly (I couldn't stop crying.) Apparently what was wrong with our son was so rare, everyone was wanting to see it and talk about it. I felt dizzy and sick. I felt like I couldn't breathe, like the world was collapsing around me.
There was something dreadfully wrong. The baby's upper arm and leg bones were measuring alarmingly short for the gestation. The rib cage was under developed, the heart was already taking out about 50% of the space, and not because the heart was enlarged but because the chest cavity wasn't big enough. There was some concern the heart we'd thought was beating so well and strong had a major problem.
The next few days were a blur, scheduled for more tests, amnio, blood tests, ultrasounds with perinatal cardiologists. More ultrasounds. More fetal scans. More waiting and more dismay and heartbreak.
At the end of it...they thought they'd narrowed it down to one very rare, but usually lethal type of skeletal dysplasia. Asphyxiating Thoracic Dysplasia. Basically, it is characterized by a shortness of the upper arm and leg bones, but most importantly the ribs and chest cavity. There isn't enough room for the lungs to grow to a sufficient size to support life outside the womb. As long as the baby was inside me, he could live and breathe through me, but the moment he'd be born and umbilical cord cut, he'd suffocate and die. It was such a rare disorder there was no genetic test for it. And it is only really confirmed in xrays and/or autopsy. We had the Xray, but they still couldn't say for sure. We had to wait and monitor the bone growth to watch the trends, all the while running the risk of my body realizing something was wrong with the baby and turning against the pregnancy at any moment. Time was against us.
More fetal scans, more tests and it was pretty much decided, the baby had what they thought he had. They said they couldn't tell us what to do, but warned about my body turning against the pregnancy. In the end, it was something the Dr. said that helped up make that fateful choice. He said the baby would never leave the delivery room alive, regardless of when that would be. The longer we waited, the greater the chance I was endangering myself. And in VA, if you get beyond 24 weeks I think it was, they are obligated to try to resuscitate the baby and try to save his life. I couldn't stomach the thought of my precious baby being poked and prodded and everything else while he suffocated or was in pain or discomfort. I couldn't do that.
And so, they induced me. I had to walk into the hospital with a living, breathing, kicking and squirming baby inside me to be induced at 22 weeks. A baby so desperately wanted and loved. A baby I did not want to have to let go of. It was the hardest thing I ever did in my life.
We had the choice to do a D&C or birth him and it wasn't a choice at all for me. He was a living breathing baby, the birthing was the only option my heart would allow. We were told he'd most likely pass during the labor, the stress of it would be too much for him and he'd die. I can't begin to tell you how horrible it is to be hooked up to IVs pumping poison into your veins, medicine that will cause the premature birth and death of a baby you so desperately want. He was moving and kicking inside me. He was so loved and wanted. It was agony.
Around 24 hours later after being induced, Noah Adam Painter was delivered on a quiet October morn in room 13 of a Richmond hospital. He was tiny, only 9.5" long and 14 ounces. He was tiny, but beautiful. He looked just like a little doll. We got to hold him and say good bye, but after he'd already passed. That had happened during the birthing process. We weren't sure exactly when because they didn't want to monitor his heartbeat because they knew it would upset me. I like to think I know when it happened, but that's another story for another time.
We held him in those quiet moments, snuggling our tiny son in our arms, cradling his still body against our hearts, willing him to feel the love we felt, so reluctant to say goodbye. We had a minister from church come and say a prayer with us. Some family members came to see him and hold him too. Eventually, with one last kiss upon his forehead and whispered I love you, I handed him over to the waiting nurse so his remains could be flown to the International Skeletal Dysplasia Registry at Cedars Sinai in California. We were told it was the best institute in the world when it came to studying this sort of thing and we thought that the best way to honor Noah was to try to help others. A few days later, we had a memorial for him at the chapel of our church.
It will be six years ago this October 31st.
My husband and I were blessed to have one healthy child before any of our problems began. We had no clue how lucky we really were or how easily something could go wrong. Oh, we loved our daughter for sure, more than anything, we were just blissfully ignorant about the struggles and devastation that others had to endure.
Our lives forever changed when I was about 19 weeks along with our second child (though we'd had one early miscarriage between the two.) Everything in the pregnancy had gone well, the AFPS, the screenings, everything had been normal and just like you'd want it to be. We had no inclination that anything was wrong and so went to our routine ultrasound halfway through the pregnancy with hopeful hearts and expectant eyes. We even had our three year old with us because she was eager to see if Mommy had a girl or boy in her tummy. All through the ultrasound things looked great, at least to our uneducated eye. The baby, a boy, had two arms and two legs, all the fingers and toes were there, the heart was beating nice and strong and the little guy was just swimming around, kicking and moving like you'd expect a healthy baby to be doing. Everything seemed so great. We are ecstatic to have a son on the way. Derek couldn't have been prouder. What man doesn't want a son to carry on his name?
And then, since little three year old girls are squirmy and impatient, he took her off to go to McDonalds and play while Mommy waited for her regular Dr. visit and the official ultrasound review. Again, never dreaming in our wildest dreams anything was wrong.
I still will never forget the Dr. coming in to the room, the dull fluorescent light beating off the white painted cinder block walls, me sitting on the end of the examine table, swinging my feet back and forth as I felt the baby move inside me, still doing somersaults. I was happy and ready with a smile when the Dr. came in, clipboard in hand. To her credit, she never really let me see the panic she must have been feeling in those moments. Or the dread. After the cursory how are you, how are you feeling today things, she said there were a couple of things that showed up on the ultrasound that were of concern. My smile faded and I felt like I suddenly couldn't breathe. What do you mean 'of concern?'
She went on to point out that the baby's femurs (upper thigh bones) were measuring a little small and there was some sign of fluid in the kidneys. Already I was freaking out, what does that mean?! It meant that there was an increased chance of Downs, though she was quick to reassure me that maybe it wasn't, maybe it was just a fluke since the AFP and other tests had all come back normal, showing low risks of just that. I wasn't over 35, so many of the things you'd be concerned about simply weren't there.
All the while I am doing my best not to cry, to try to stay calm even though my heart was breaking and I wanted to scream. No! This can't be right! This can't be happening! My baby is fine! My son is fine!
They scheduled me to have a fetal scan (really long ultrasound) the next day with a perinatal specialist and meet with a genetic counselor (something you had to do when meeting with the perinatal specialist.) I managed to hold it together until I got outside and opened the car door. I lost it was soon as I did and let out the most heart wrenched cry/sound I've ever uttered in my life. I can't explain it, I just couldn't control it. I started crying hysterically as soon as I got in the car, completely freaking out and panicking my husband who didn't know what just hit him. I tried to explain through my uncontrolled sobs, I couldn't even mask the pain and fear from my daughter in the backseat. It was just too painful. Too unexpected.
We get home and I somehow manage to tell my husband what was said at the Dr.'s office. We are devastated. Everything, the life we'd imagined for our child is changing before our eyes. But through it all, as bad as it was, as unnerving, we somehow managed to console ourselves. Even if it was Downs at least he looked healthy, his heart looked strong, he was moving and active, he had two arms and legs, fingers and toes. If something was wrong, if he had Down's, it would still be ok. We could manage. We'd take our son in whatever form God gave him to us. They were probably wrong because he looked just fine to us and all the earlier tests had been negative, but if he did have Down's, it would be ok. We did a lot of praying and crying that night, but in the end...felt hope. The worst we'd hear the next day was that he had Down's and it would be ok. Everything would be ok.
The next day, scarcely able to breathe, we went for the fetal scan, all along thinking it was some mistake soon to be rectified. The fetal scan was long, and all during the time it was being done and the technician was telling us which bone she was measuring, the flow of the blood, the placenta, all of it...we kept thinking it was all some horrid mistake. Our son looked beautiful and healthy, moving and kicking and squirming, the heart beating so strongly. My husband and I exchanged more than one look, thinking in our hearts it was all fine. He looked great.
Of course the technician was not allowed to tell us anything, other than what she was measuring. And again, to her credit, she never let on anything was wrong and so we were utterly unprepared for the Dr. when he came in (after reviewing the ultrasound images and notes outside) and he picked up the wand and started whizzing it over my rounded belly, saying there were several things of great concern (first shock) and then he uttered that most dreaded of words, one that forever changed my life, "Possibly lethality."
OMG, how was this happening?! What was happening? It was all too fast, too sudden, too shocking. How could this be happening to us, to our precious baby? To a baby we so desperately wanted and loved? To a baby who'd seemed healthy for 19+ weeks?
Naturally, I lost it and started crying amid the Dr.'s apologies for being so abrupt, my husband clinging to my hand as I tried to hold still and let the Dr. point out this bone or that, all things pointing to something majorly wrong. In came the genetic counselors, a room full of virtual strangers all talking and staring at the screens while the wand passed over my shaking belly (I couldn't stop crying.) Apparently what was wrong with our son was so rare, everyone was wanting to see it and talk about it. I felt dizzy and sick. I felt like I couldn't breathe, like the world was collapsing around me.
There was something dreadfully wrong. The baby's upper arm and leg bones were measuring alarmingly short for the gestation. The rib cage was under developed, the heart was already taking out about 50% of the space, and not because the heart was enlarged but because the chest cavity wasn't big enough. There was some concern the heart we'd thought was beating so well and strong had a major problem.
The next few days were a blur, scheduled for more tests, amnio, blood tests, ultrasounds with perinatal cardiologists. More ultrasounds. More fetal scans. More waiting and more dismay and heartbreak.
At the end of it...they thought they'd narrowed it down to one very rare, but usually lethal type of skeletal dysplasia. Asphyxiating Thoracic Dysplasia. Basically, it is characterized by a shortness of the upper arm and leg bones, but most importantly the ribs and chest cavity. There isn't enough room for the lungs to grow to a sufficient size to support life outside the womb. As long as the baby was inside me, he could live and breathe through me, but the moment he'd be born and umbilical cord cut, he'd suffocate and die. It was such a rare disorder there was no genetic test for it. And it is only really confirmed in xrays and/or autopsy. We had the Xray, but they still couldn't say for sure. We had to wait and monitor the bone growth to watch the trends, all the while running the risk of my body realizing something was wrong with the baby and turning against the pregnancy at any moment. Time was against us.
More fetal scans, more tests and it was pretty much decided, the baby had what they thought he had. They said they couldn't tell us what to do, but warned about my body turning against the pregnancy. In the end, it was something the Dr. said that helped up make that fateful choice. He said the baby would never leave the delivery room alive, regardless of when that would be. The longer we waited, the greater the chance I was endangering myself. And in VA, if you get beyond 24 weeks I think it was, they are obligated to try to resuscitate the baby and try to save his life. I couldn't stomach the thought of my precious baby being poked and prodded and everything else while he suffocated or was in pain or discomfort. I couldn't do that.
And so, they induced me. I had to walk into the hospital with a living, breathing, kicking and squirming baby inside me to be induced at 22 weeks. A baby so desperately wanted and loved. A baby I did not want to have to let go of. It was the hardest thing I ever did in my life.
We had the choice to do a D&C or birth him and it wasn't a choice at all for me. He was a living breathing baby, the birthing was the only option my heart would allow. We were told he'd most likely pass during the labor, the stress of it would be too much for him and he'd die. I can't begin to tell you how horrible it is to be hooked up to IVs pumping poison into your veins, medicine that will cause the premature birth and death of a baby you so desperately want. He was moving and kicking inside me. He was so loved and wanted. It was agony.
Around 24 hours later after being induced, Noah Adam Painter was delivered on a quiet October morn in room 13 of a Richmond hospital. He was tiny, only 9.5" long and 14 ounces. He was tiny, but beautiful. He looked just like a little doll. We got to hold him and say good bye, but after he'd already passed. That had happened during the birthing process. We weren't sure exactly when because they didn't want to monitor his heartbeat because they knew it would upset me. I like to think I know when it happened, but that's another story for another time.
We held him in those quiet moments, snuggling our tiny son in our arms, cradling his still body against our hearts, willing him to feel the love we felt, so reluctant to say goodbye. We had a minister from church come and say a prayer with us. Some family members came to see him and hold him too. Eventually, with one last kiss upon his forehead and whispered I love you, I handed him over to the waiting nurse so his remains could be flown to the International Skeletal Dysplasia Registry at Cedars Sinai in California. We were told it was the best institute in the world when it came to studying this sort of thing and we thought that the best way to honor Noah was to try to help others. A few days later, we had a memorial for him at the chapel of our church.
It will be six years ago this October 31st.
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