Whether it be three days from now, three months from now, or three years from now - Please don't go!
If you found this blog because you're looking for stories or information on infertility, preeclampsia, HELLP Syndrome, clotting disorders, hypolastic left heart syndrome (HLHS), stillbirth, loss, or pregnancy after a loss - please don't go!
I'm not saying that my story is rare or particulary well-written, but it is unique, as they all are. Maybe you could relate to it in some way? Maybe we could help each other?
Until a moment ago this blog had over 200 posts. As you can see, I just deleted nearly all of them - all but a few (which still feel too personal!) that give a snapshot of the facts and contain a few key words, in hopes that you might find me still.
Why the deletion? Well, I was found by someone in real life. Although this blog was public and that has always been a possibility, the knowledge that someone I knew was reading along made me uncomfortable and unable to share fully. So I decided to move and start a private blog elsewhere. I transferred each and every one of my posts to that new blog so that I still have my story intact. Then I realized that the possibility of somone else IRL ever happening upon this space scared me, and therefore I should delete it.
But I didn't want to disappear completely. When I was physically recovering after HELLP Syndrome, and still reeling from the loss of our twins, reading others' stories kept me going. It's how I filled my days, and it's how I began to understand both the emotional and physical aspects of what had happened and what was going on. It made me feel "normal" and it gave me hope.
If you'd like to read my story, please send me an email - littlebluebirdsfly@gmail.com.
And - I'm sorry. It's most likely some pain that has brought you here and for that -for whatever you are experiencing - I'm sorry.
Thursday, June 10, 2010
Monday, April 26, 2010
Did I Tell You? (On Clotting Disorders)
I know this post seems out of the blue - everything will be explained in he next post. But as I was typing The Next Post, I was reminded of something that I meant to tell you, and I'm not sure if I have yet, just in case it might help someone reading.
You might recall that, when I was in the hospital with HELLP Syndrome, I tested positive with a whole host of clotting disorders (lupus anticoagulant, anticardiolipin antibodies igm, protein S deficiency, and MTHFR). After my pregnancy, however, I only tested positive for slight protein S deficiency and MTHFR - I was no longer actually a clotter in the eyes of my hematologist. (Which is wonderful in terms of my overall health.) In the eyes of my MFM however, I for some reason became a clotter when pregnant
You might recall that the role of clotting disorders in pregnancy is still being understood. That the evidence linking clotting disorders and preeclampsia is not concrete, and is actually becoming shakier over time. Nonetheless, due to my history, I was on Lovenox throughout this pregnancy.
You might also recall that my MFM has a remarkable way of not providing direct or concrete answers to questions :)
You might therefore understand my surprise when he - twice now- directly answered my question of "What happened?" What went right? Why was this pregnancy so strangely uneventful?
I first asked him in the delivery room while he was stitching me up (What? I had a captive audience!), and again at my 6 week appointment. He clearly and succinctly responded: 1) I was carrying a single child rather than multiples, and 2) "We realized that [I] needed to be anticoagulated."
So there you go.
I'm not saying that my MFM knows any more than the next. There is certainly a wide range of opinions out there on the subject of whether and which women should be anticoagulated during pregnancy. But I will tell you that, in my eyes, my MFM is the reason this baby is laying across my lap right now. And if he says that Lovenox was the magic ticket, then that's all right with me. And for anyone out there facing a similar circumstance - I just wanted to share.
You might recall that, when I was in the hospital with HELLP Syndrome, I tested positive with a whole host of clotting disorders (lupus anticoagulant, anticardiolipin antibodies igm, protein S deficiency, and MTHFR). After my pregnancy, however, I only tested positive for slight protein S deficiency and MTHFR - I was no longer actually a clotter in the eyes of my hematologist. (Which is wonderful in terms of my overall health.) In the eyes of my MFM however, I for some reason became a clotter when pregnant
You might recall that the role of clotting disorders in pregnancy is still being understood. That the evidence linking clotting disorders and preeclampsia is not concrete, and is actually becoming shakier over time. Nonetheless, due to my history, I was on Lovenox throughout this pregnancy.
You might also recall that my MFM has a remarkable way of not providing direct or concrete answers to questions :)
You might therefore understand my surprise when he - twice now- directly answered my question of "What happened?" What went right? Why was this pregnancy so strangely uneventful?
I first asked him in the delivery room while he was stitching me up (What? I had a captive audience!), and again at my 6 week appointment. He clearly and succinctly responded: 1) I was carrying a single child rather than multiples, and 2) "We realized that [I] needed to be anticoagulated."
So there you go.
I'm not saying that my MFM knows any more than the next. There is certainly a wide range of opinions out there on the subject of whether and which women should be anticoagulated during pregnancy. But I will tell you that, in my eyes, my MFM is the reason this baby is laying across my lap right now. And if he says that Lovenox was the magic ticket, then that's all right with me. And for anyone out there facing a similar circumstance - I just wanted to share.
Saturday, March 13, 2010
He's here!!
Hello from Mr. Bluebird. Mrs. Bluebird and I would like to let you all know that Little Baby Bluebird arrived last night, March 12th, at 7:02 p.m. central time. Weighing in at 7 lbs. 7 oz. and measuring 21 inches, he's as perfect as any little baby can be. 8-9 on his APGAR. Mrs. Bluebird will be posting soon enough, but we wanted to let all of you know that mom and baby are doing great! Can't wait for you all to meet him!!!
Friday, October 2, 2009
The Thing About Preeclampsia
Some time ago I received a phone call from a friend. She was late in the third trimester of her second pregnancy. She had been experiencing swelling and high blood pressure, and at her last appointment was told that she was spilling protein. Her doctor casually mentioned “preeclampsia.” So she called me.
I asked my friend for her lab numbers. And honestly, I was worried. Something was definitely going on. I know my story is the very rare worst case scenario, so I always consciously try to walk the fine line between trying to educate people about this little-known condition and, well, stepping out of place.
But my friend called for advice, so I tried to give it in a calm, non-alarmist manner.
I casually suggested that my friend buy a blood pressure cuff and that she push her doctor to do a 24 hour urine test. But it was the strangest thing. . . after calling me for advice – she kind of brushed me off! Denial, no doubt. But the most troubling part was that it seemed as if her doctor was being rather lackadaisical about the situation, too. But whatever. “Well, trust your doctor, I suppose. I’m sure he knows what’s best. . .”
After that, I called my friend several times to check up on her.
“So, how was your blood pressure today?,” I asked.
“Oh, a little high, but they did another ultrasound and the baby looks great!”
“Yes, but what about protein? Are you still spilling protein?”
“Yeah, I think that’s gone up a little, too. But the baby still has plenty of amniotic fluid, so that’s good!”
“Yes, but. . .
“And he’s still measuring right on track!”
“Yes, but. . .”
She kept insisting. . .
And I just wanted to scream: IT DOESN’T MATTER!!!
Let me tell you about our babies. They were beautiful. And perfect. Measured right on track. Perfect levels of amniotic fluid. Ten fingers and ten toes.
But it wasn’t enough.
People always worry and talk about the baby’s health. But what about the mother?
See, that’s the thing about preeclampsia/ HELLP Syndrome. (And, I suspect, the thing about preterm labor and placental abruptions and incompetent cervixes, and a whole host of other conditions about which I do not know enough to address.) It’s not a condition of the baby. Preeclampsia certainly affects the baby; it can cause IUGR or low amniotic fluid or, obviously, prematurity and death. But it’s not a condition of the baby.
It’s a condition of the mother.
Here in the south we have a saying: If mama ain’t happy, ain’t nobody happy. (I suspect that there is a comparable northern saying that simply involves better grammar.) But what about – if mama ain’t healthy, ain’t nobody healthy?
And I’m not talking “not healthy” as in the mother drinks a gallon of Jack and smokes a carton of cigarettes a day. In the case of preeclampsia, I’m talking “not healthy” as in the mother’s body rejects – violently and unequivocally rejects - the foreign matter inside it. The foreign matter that, for years, was dreamt about, and hoped for, and prayed for, and cried for (and, quite frankly, paid for).
Women like my friend like to talk about A Mother’s Love; about how they've never known a love so great and how they’d do anything for their children. Well, I’m here to tell you this – I would have done anything for those babies. I would have given my life.
Take me, not them I wanted to beg the doctors - even as they were explaining to me that that simply wasn't possible. Even if I had given my life – even if I had died right then– they still would have died, too. Not because anything was wrong with them. They were just too small to make it. They died all because I wasn’t healthy.
So, did I say all this to my friend? No, of course not. I just kept trying to steer her with the “Yes, but’s. . .,” while silently begging her to keep an eye on her own health for the sake of them both. And I kept listening to her carry on – insisting – about how perfect her baby was.
And then I got off the phone, and whispered to myself. . . Mine were, too.
MINE WERE, TOO.
(Of course, all babies are perfect and the above is not to say or suggest anything about those who have died because of his or her own health condition. I'm just sharing the other side of the story which is apparently little known to those outside our community).
I asked my friend for her lab numbers. And honestly, I was worried. Something was definitely going on. I know my story is the very rare worst case scenario, so I always consciously try to walk the fine line between trying to educate people about this little-known condition and, well, stepping out of place.
But my friend called for advice, so I tried to give it in a calm, non-alarmist manner.
I casually suggested that my friend buy a blood pressure cuff and that she push her doctor to do a 24 hour urine test. But it was the strangest thing. . . after calling me for advice – she kind of brushed me off! Denial, no doubt. But the most troubling part was that it seemed as if her doctor was being rather lackadaisical about the situation, too. But whatever. “Well, trust your doctor, I suppose. I’m sure he knows what’s best. . .”
After that, I called my friend several times to check up on her.
“So, how was your blood pressure today?,” I asked.
“Oh, a little high, but they did another ultrasound and the baby looks great!”
“Yes, but what about protein? Are you still spilling protein?”
“Yeah, I think that’s gone up a little, too. But the baby still has plenty of amniotic fluid, so that’s good!”
“Yes, but. . .
“And he’s still measuring right on track!”
“Yes, but. . .”
She kept insisting. . .
And I just wanted to scream: IT DOESN’T MATTER!!!
Let me tell you about our babies. They were beautiful. And perfect. Measured right on track. Perfect levels of amniotic fluid. Ten fingers and ten toes.
But it wasn’t enough.
People always worry and talk about the baby’s health. But what about the mother?
See, that’s the thing about preeclampsia/ HELLP Syndrome. (And, I suspect, the thing about preterm labor and placental abruptions and incompetent cervixes, and a whole host of other conditions about which I do not know enough to address.) It’s not a condition of the baby. Preeclampsia certainly affects the baby; it can cause IUGR or low amniotic fluid or, obviously, prematurity and death. But it’s not a condition of the baby.
It’s a condition of the mother.
Here in the south we have a saying: If mama ain’t happy, ain’t nobody happy. (I suspect that there is a comparable northern saying that simply involves better grammar.) But what about – if mama ain’t healthy, ain’t nobody healthy?
And I’m not talking “not healthy” as in the mother drinks a gallon of Jack and smokes a carton of cigarettes a day. In the case of preeclampsia, I’m talking “not healthy” as in the mother’s body rejects – violently and unequivocally rejects - the foreign matter inside it. The foreign matter that, for years, was dreamt about, and hoped for, and prayed for, and cried for (and, quite frankly, paid for).
Women like my friend like to talk about A Mother’s Love; about how they've never known a love so great and how they’d do anything for their children. Well, I’m here to tell you this – I would have done anything for those babies. I would have given my life.
Take me, not them I wanted to beg the doctors - even as they were explaining to me that that simply wasn't possible. Even if I had given my life – even if I had died right then– they still would have died, too. Not because anything was wrong with them. They were just too small to make it. They died all because I wasn’t healthy.
So, did I say all this to my friend? No, of course not. I just kept trying to steer her with the “Yes, but’s. . .,” while silently begging her to keep an eye on her own health for the sake of them both. And I kept listening to her carry on – insisting – about how perfect her baby was.
And then I got off the phone, and whispered to myself. . . Mine were, too.
MINE WERE, TOO.
(Of course, all babies are perfect and the above is not to say or suggest anything about those who have died because of his or her own health condition. I'm just sharing the other side of the story which is apparently little known to those outside our community).
Thursday, August 13, 2009
A Start
Well, ladies, we saw a heartbeat. I am really, genuinely surprised. And I must have unconsciously convinced myself that there wouldn't be one, because I've already noticed a slight shift in my attitude. It really helps to know that all this crap,* for now at least!, is for a reason.
My MFM was wonderful. He shook B's hand and gave me a hug, and told us how very happy he was to see us back. This sounds awful, but I was a little worried that we'd become just a number by treating with an MFM only. You know, at my OB's office we were "special" - the MFM sees high risk stuff all. day. long. But everyone (with the exception of the scheduling lady) was very kind and personal.
For now, we're going to just stay the course with my meds. That surprised me a little since I expected that we'd be increasing my Lovenox dosage, but he said we're going to put that off until if/ when I reach 13 weeks. I question this, but the science on thrombophilias and preeclampsia is so sketchy anyway, I know there's no firm right answer here.
I'm going to be seeing him every 2 weeks - well, except my next appointment. Apparently there's not an opening in 2 weeks so I have to wait 3. Do I even have to tell you how totally not happy that conversation with the scheduling girl made me! Grrrrrr.
Beyond that there's not much to report! You know, this is the same doctor with whom I got so irritated because he wouldn't give me any numbers. He wouldn't give me a goal gestational age, he wouldn't give me percentages or probabilities. . . And this time - I didn't even ask. My tongue is bleeding from biting it so hard! This goes against everything in my nature, this huge vast uncertainty. To have a due date, but know I'll never reach it, but yet to still not be able to say, "I'll probably be x many weeks early." To not have a freaking clue what to tell my bosses if/ when the time comes for that.
And it is so, so hard knowing that, really, there's not a damn thing they can do for me. These every-two-week appointments aren't to fix anything or cure anything or cause anything. I mean, therein lies the devil of preeclampsia. There is nothing anyone can do. But watch. We watch and wait, and hope that the Lovenox, and the facts of a second pregnancy and a single pregnancy, will buy us some time.
I'm still sick. I still can't stop crying. I still miss our babies in such a sharp way. But I am really, really trying to embrace his mentality right now. 2 weeks at a time. 2 weeks at a time.
::Deep breaths::
Thank you all for your continued support, kind words, and encouragement. It means so much to be walking this road with you.
*Refering to the morning sickness and etc., not anything to do with our twins, of course.
My MFM was wonderful. He shook B's hand and gave me a hug, and told us how very happy he was to see us back. This sounds awful, but I was a little worried that we'd become just a number by treating with an MFM only. You know, at my OB's office we were "special" - the MFM sees high risk stuff all. day. long. But everyone (with the exception of the scheduling lady) was very kind and personal.
For now, we're going to just stay the course with my meds. That surprised me a little since I expected that we'd be increasing my Lovenox dosage, but he said we're going to put that off until if/ when I reach 13 weeks. I question this, but the science on thrombophilias and preeclampsia is so sketchy anyway, I know there's no firm right answer here.
I'm going to be seeing him every 2 weeks - well, except my next appointment. Apparently there's not an opening in 2 weeks so I have to wait 3. Do I even have to tell you how totally not happy that conversation with the scheduling girl made me! Grrrrrr.
Beyond that there's not much to report! You know, this is the same doctor with whom I got so irritated because he wouldn't give me any numbers. He wouldn't give me a goal gestational age, he wouldn't give me percentages or probabilities. . . And this time - I didn't even ask. My tongue is bleeding from biting it so hard! This goes against everything in my nature, this huge vast uncertainty. To have a due date, but know I'll never reach it, but yet to still not be able to say, "I'll probably be x many weeks early." To not have a freaking clue what to tell my bosses if/ when the time comes for that.
And it is so, so hard knowing that, really, there's not a damn thing they can do for me. These every-two-week appointments aren't to fix anything or cure anything or cause anything. I mean, therein lies the devil of preeclampsia. There is nothing anyone can do. But watch. We watch and wait, and hope that the Lovenox, and the facts of a second pregnancy and a single pregnancy, will buy us some time.
I'm still sick. I still can't stop crying. I still miss our babies in such a sharp way. But I am really, really trying to embrace his mentality right now. 2 weeks at a time. 2 weeks at a time.
::Deep breaths::
Thank you all for your continued support, kind words, and encouragement. It means so much to be walking this road with you.
*Refering to the morning sickness and etc., not anything to do with our twins, of course.
Thursday, July 23, 2009
Beating the Odds
We have beaten the odds across the board. Not in the sense that we’ve had positive outcomes, of course. (Although, for a time, we certainly thought we had “beaten the odds” in the most joyful of ways – oh how ecstatic and confident we were – of course IUI with injectibles worked, and of course we were expecting twins!) But, rather, in the sense that none of our outcomes, statistically, should have occurred. Consider the following:
30% chance that IUI with injectibles is successful after 3-4 cycles
25% of those pregnancies are twin pregnancies.
5-7% of all pregnancies develop preeclampsia
2-12% of those pregnancies develop HELLP Syndrome
0.2% of babies are diagnosed with HLHS
Anyone enough of a numbers-wiz to figure out the statistical likelihood of all this happening in the same pregnancy??
I have unabashedly said to B that, once we start treatment again, I hope I’m able to get pregnant “easily.” I say "unabashedly" because I know that many of you have been on this journey longer and have to endure more intensive treatments, so sometimes I feel bad for having such thoughts. . . but, for us - it’s been almost three years, thousands of dollars, two dead babies, indescribable heartache - and, "next time," getting pregnant would just be the beginning! And that's quite enough for me, thankyouverymuch :)
But then I almost had to laugh – why in the world would I be so bold as to think that we could beat the odds again as far as getting pregnant goes – but then fall into the majority on the remainder of the statistics?
No, I told B, it almost seems as if we should resign ourselves to even more months and years of IF, possibly move on to IVF (and maybe even multiple miscarriages this time, just for an added punch) if we are to avoid the same ultimate outcomes as last time. Maybe it’s all or nothing – beat the odds across the board, or be universally “normal”? (Isn’t it interesting how terms like “easily” and “normal” become so relative in the IF world?) Although I fear not being able to get pregnant again – I am now much more fearful of getting pregnant and not being able to keep a baby alive.
Anyway, we just found out that B and I beat another odd, too:
1% chance of getting pregnant without treatment
Yep, that means what you think it does. Go frickin' figure.
I know this stings for some of you to read, and for that I am so, so sorry. And I know I might kick myself for even posting this at all – I’m telling you right away (no, really, like right away). . . but that is because I am so freaked out and have such mixed emotions about this, for so many reasons (not the least of which being that this is exactly when I got pregnant with the twins last year) - and I need an outlet.
In 24 hours it’s already become a whirlwind of doctors and insurance companies like I never imagined. The frenzy reminds me that I have reason to be terrified. I have a million blog posts swirling around in my head, and feel as if I just need to take the day off work and get them typed out, and out of my head!
Maybe I’ll also publish all the posts I drafted over the past few weeks about IF and our upcoming treatment cycle. (We were planning to do our first post-babies IUI next cycle.) I wrote these posts, but didn’t publish them at the time- ? And I might still toss them up here, even though circumstances have momentarily changed, just to let you know where my mind or was.
I can't even wrap my head around this most recent development. It’s so surreal.
I understand if some of you would rather not read what’s coming. But I do ask this – please, please cross your fingers for us. Think of us, pray for us – whatever it is that you do. This is just the beginning. Of whatever comes next.
30% chance that IUI with injectibles is successful after 3-4 cycles
25% of those pregnancies are twin pregnancies.
5-7% of all pregnancies develop preeclampsia
2-12% of those pregnancies develop HELLP Syndrome
0.2% of babies are diagnosed with HLHS
Anyone enough of a numbers-wiz to figure out the statistical likelihood of all this happening in the same pregnancy??
I have unabashedly said to B that, once we start treatment again, I hope I’m able to get pregnant “easily.” I say "unabashedly" because I know that many of you have been on this journey longer and have to endure more intensive treatments, so sometimes I feel bad for having such thoughts. . . but, for us - it’s been almost three years, thousands of dollars, two dead babies, indescribable heartache - and, "next time," getting pregnant would just be the beginning! And that's quite enough for me, thankyouverymuch :)
But then I almost had to laugh – why in the world would I be so bold as to think that we could beat the odds again as far as getting pregnant goes – but then fall into the majority on the remainder of the statistics?
No, I told B, it almost seems as if we should resign ourselves to even more months and years of IF, possibly move on to IVF (and maybe even multiple miscarriages this time, just for an added punch) if we are to avoid the same ultimate outcomes as last time. Maybe it’s all or nothing – beat the odds across the board, or be universally “normal”? (Isn’t it interesting how terms like “easily” and “normal” become so relative in the IF world?) Although I fear not being able to get pregnant again – I am now much more fearful of getting pregnant and not being able to keep a baby alive.
Anyway, we just found out that B and I beat another odd, too:
1% chance of getting pregnant without treatment
Yep, that means what you think it does. Go frickin' figure.
I know this stings for some of you to read, and for that I am so, so sorry. And I know I might kick myself for even posting this at all – I’m telling you right away (no, really, like right away). . . but that is because I am so freaked out and have such mixed emotions about this, for so many reasons (not the least of which being that this is exactly when I got pregnant with the twins last year) - and I need an outlet.
In 24 hours it’s already become a whirlwind of doctors and insurance companies like I never imagined. The frenzy reminds me that I have reason to be terrified. I have a million blog posts swirling around in my head, and feel as if I just need to take the day off work and get them typed out, and out of my head!
Maybe I’ll also publish all the posts I drafted over the past few weeks about IF and our upcoming treatment cycle. (We were planning to do our first post-babies IUI next cycle.) I wrote these posts, but didn’t publish them at the time- ? And I might still toss them up here, even though circumstances have momentarily changed, just to let you know where my mind or was.
I can't even wrap my head around this most recent development. It’s so surreal.
I understand if some of you would rather not read what’s coming. But I do ask this – please, please cross your fingers for us. Think of us, pray for us – whatever it is that you do. This is just the beginning. Of whatever comes next.
Tuesday, May 26, 2009
Hypoplastic Left Heart Syndrome
This is baby B's “heart defect” to which I have referred but had not yet identified.
As you might recall, when we went for our anatomy scan at 19w2d, we were told that there might be a problem with our little girl, baby B’s, heart. The ultrasound tech said she couldn’t get a good picture of the left side. One of the MFMs, Dr. G, came in and agreed that the left side could not be seen well – but, baby B was always smaller, always measuring a little behind baby A. So maybe it was just too early to get a really good look of her heart. Dr. G. told us to come back in a week and retest. Hopefully everything would be fine. If not - to a pediatric cardiologist we go.
That night my OB called and told me to go to the hospital. I had no idea everything was falling apart. All I could think of, all I could focus on or bargain for – was that my little girl B’s heart be okay.
When I was in the hospital, after I delivered our babies, my "head" MFM, Dr. C, requested an autopsy to look at baby B's heart. So, was it related?, I asked. Did my HELLP Syndrome have anything to do with her heart defect? No, he said. Nothing at all.
You mean there were *more* cards stacked against me and my babies?! I cried. It's not enough that my body apparently *hates* to be pregnant??
Yes, it seems so, he said. Double whammy.
(Incidentally, I received this same response when I asked my RE if my clotting disorders that led to my HELLP caused my infertility. She said no. Double whammy?, I asked. Yes, she responded. You’re just my unluckiest patient. So make it a tipple whammy: IF, clotting disorders/HELLP Syndrome, and heart defects. But I digress.)
The autopsy results were inconclusive. I was crushed. I needed answers. So I asked for the report from the anatomy scan. And there I saw it: “Probable HLHS.” Hypoplastic Left Heart Syndrome.
Hypoplastic Left Heart Syndrome (HLHS) is one of the most complex cardiac defects seen in the newborn and remains probably the most challenging to manage of all congenital heart defects. In a child with HLHS, all of the structures on the left side of the heart (the side which receives oxygen-rich blood from the lungs and pumps it out to the body), including the aorta, are severely underdeveloped. Infants with HLHS develop life-threatening shock when the ducutus arteriosus begins to close, typically within the first hours or days of life.
The preferred treatment is a heart transplant within the first 24 hours of birth. Since often there are not organs available to transplant, the most common treatment is a series of three reconstructive operations, the first performed within the first week, the second during the first six months, and the third within the first two to three years.
When we went for our follow-up with Dr. C, I asked him – So really, doctor. What do you think was going on with her heart? He started speaking slowly: Well, Dr. G is one of the best in the business. She knows how to read ultrasounds, and she knows how to find what she’s looking for. . .
Rate of recurrence: 5%. Maybe as high as 25%. One study claims a 13% recurrance risk and a 22% chance of some other cardiovascular malformation.
Nuts.
I tell you this, dear friends, so that, should I find myself pregnant again one day down the road, and I come to you with my anxiety and fear, you will know all its many sources. Fear that my body is failing my child. Fear that my child's body is failing him or her. A tripple whammy. So many insults added to injury. It's all a little hard to get my head around.
I feel valid in my anxiety; it's not unfounded. The science - the numbers - are very, very real. And only my baseless belief that we should now be immune from all bad things keeps me hopeful that we will, for the first time, fall on the right side of the odds.
As you might recall, when we went for our anatomy scan at 19w2d, we were told that there might be a problem with our little girl, baby B’s, heart. The ultrasound tech said she couldn’t get a good picture of the left side. One of the MFMs, Dr. G, came in and agreed that the left side could not be seen well – but, baby B was always smaller, always measuring a little behind baby A. So maybe it was just too early to get a really good look of her heart. Dr. G. told us to come back in a week and retest. Hopefully everything would be fine. If not - to a pediatric cardiologist we go.
That night my OB called and told me to go to the hospital. I had no idea everything was falling apart. All I could think of, all I could focus on or bargain for – was that my little girl B’s heart be okay.
When I was in the hospital, after I delivered our babies, my "head" MFM, Dr. C, requested an autopsy to look at baby B's heart. So, was it related?, I asked. Did my HELLP Syndrome have anything to do with her heart defect? No, he said. Nothing at all.
You mean there were *more* cards stacked against me and my babies?! I cried. It's not enough that my body apparently *hates* to be pregnant??
Yes, it seems so, he said. Double whammy.
(Incidentally, I received this same response when I asked my RE if my clotting disorders that led to my HELLP caused my infertility. She said no. Double whammy?, I asked. Yes, she responded. You’re just my unluckiest patient. So make it a tipple whammy: IF, clotting disorders/HELLP Syndrome, and heart defects. But I digress.)
The autopsy results were inconclusive. I was crushed. I needed answers. So I asked for the report from the anatomy scan. And there I saw it: “Probable HLHS.” Hypoplastic Left Heart Syndrome.
I spent the rest of the afternoon glued to my computer:
Hypoplastic Left Heart Syndrome (HLHS) is one of the most complex cardiac defects seen in the newborn and remains probably the most challenging to manage of all congenital heart defects. In a child with HLHS, all of the structures on the left side of the heart (the side which receives oxygen-rich blood from the lungs and pumps it out to the body), including the aorta, are severely underdeveloped. Infants with HLHS develop life-threatening shock when the ducutus arteriosus begins to close, typically within the first hours or days of life.
The preferred treatment is a heart transplant within the first 24 hours of birth. Since often there are not organs available to transplant, the most common treatment is a series of three reconstructive operations, the first performed within the first week, the second during the first six months, and the third within the first two to three years.
When we went for our follow-up with Dr. C, I asked him – So really, doctor. What do you think was going on with her heart? He started speaking slowly: Well, Dr. G is one of the best in the business. She knows how to read ultrasounds, and she knows how to find what she’s looking for. . .
Translation: what she was looking for – the left side of my baby’s heart – essentially wasn’t there. Hypoplastic Left Heart Syndrome.
Rate of recurrence: 5%. Maybe as high as 25%. One study claims a 13% recurrance risk and a 22% chance of some other cardiovascular malformation.
Nuts.
I tell you this, dear friends, so that, should I find myself pregnant again one day down the road, and I come to you with my anxiety and fear, you will know all its many sources. Fear that my body is failing my child. Fear that my child's body is failing him or her. A tripple whammy. So many insults added to injury. It's all a little hard to get my head around.
I feel valid in my anxiety; it's not unfounded. The science - the numbers - are very, very real. And only my baseless belief that we should now be immune from all bad things keeps me hopeful that we will, for the first time, fall on the right side of the odds.
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