We lost our baby to severe pre-eclampsia and HELLP

This section is for discussions with other women who have probably been through the same signs/symptoms that you may be experiencing. Please note, we cannot offer medical advice and encourage members to discuss their concerns with their doctors. New members, come on in and introduce yourself!

We lost our baby to severe pre-eclampsia and HELLP

Postby RemcoNL » Fri Nov 15, 2013 08:41 am

I am a new user on this forum, and I am a guy. I skip the "Dads"-section for my introduction, as its rarely used. So far this website has been helpful. I read a lot, although some information just scares me.

We lost our baby daughter 2.5 months ago because of severe pre-eclampsia and HELLP-syndrome. My wife was diagnosed at 20 weeks, 5 days, and our baby was stillborn 2 weeks later. My wife spent 19 days in the hospital, and is still recovering. Physically she's made a huge progress, since 4 weeks she could stop the blood pressure medication. Emotionally it varies, for both of us.
Since two weeks my wife started working again "on a theraputic basis". The recommendation is to wait at least 6 months before getting pregnant again. We still want children of course, but it scares us big time now.


A copy/paste of the full summary of events:
10 week ultrasound (June 10): increased chance of chromosomal defects (trysomi 18 en 13): 1:178. This is a high risk.
Monday August 12: 20 week ultrasound: head and belly are too small.
Tuesday: a lot of stress.
Wednesday August 14: extensive ultrasound by gynecologist: head and belly are okay. Not the largest, but for sure not too small. The organs/hands/feet/eyes/ears/etc. have been checked thoroughly. Everything looks good.

Thursday: after a few days with starting tummy aches, this got much worse in the evening. At 22:00h we called the midwife, 22:45 we were there. Blood pressure got measured, and my wife was instantly hospitalized. Eventually I “slept” at 4 AM, waking up countless times, and went back to the hospital at 8 AM.

Friday the diagnosis worsened several times. The same day we got offered a social worker two times, which we rejected (“why would we need that?”). It only occurred to us later this was because of the very long process we would end up in.
This morning we had the same gynecologist as Wednesday evening. “Your wife is going to make it”, she told me. Here too it only occurred to me later how serious the situation was. The diagnosis varied from “we'll keep her for a few days for observation” to “you'll spend months in the hospital”.
The plan to go to another hospital (a specialized children's hospital) on Monday was accelerated, and Friday evening 20:00h we arrived there by ambulance. Here all tests were done again. Result of the ultrasound: the baby is on the bottom 3% growth curve, and the placenta is not attached well. At the extensive ultrasound two days earlier this was overlooked, as the rest of the ultrasound looked very good.
The diagnosis: severe pre-eclampsia. The predictions: 20% chance of a live baby. They try to extend it until the baby has progressed enough to be born. They often mentioned 25-27 weeks. For now they cannot do anything else than try to keep the mother stable, if it gets too bad the baby/placenta has to be removed.

Tuesday August 20: my wife had an amniocentesis. Earlier we didn't want that because of the 0.3% risk to loose the baby. Now this risk is nothing compared to the risk the baby is not going to make it anyway, while the doctors estimate the chances of chromosomal defects on 1-10%. They also analyze my (the father's) DNA, to determine of any deviations in the baby come from the father or the mother (that is not a problem) or arose spontaneously (that is a problem). If this test shows chromosome abnormalities, we know what to do. If not, we're back to where we started.

Wednesday August 21: The first results of the chromosomal tests show no defects. The rest of the testing for much less likely defects takes up to two weeks.

We try to discuss chances and scenarios with the doctors. We do not want a badly handicapped child, both for us as well as for the child itself. The (legal) abortion limit is 24 weeks, and before that time we should have the full results of the amniocentesis.

Scientific research in Rotterdam on 26 women (two of which pregnant with twins), diagnosed with pre-eclampsia before 24 weeks pregnancy shows the chances: this produced five living babies and one dead mother. None of those women was offered an early abortion, extending the pregnancy varied from 3 to only 42 days. Much too early to have a good chance on a normal life as a baby. This also means they get the baby out once the mother is not going to make it anymore. Typically the condition of the mother worsens for two more days once the placenta is out.
Some positive note: in the second pregnancy from the same partner chances of pre-eclampsia are “only” 25%, but almost always later and less severe. That means we can still have children if this one does not make it.
It is amazing how quickly you accept the possibility of loosing a baby when your wife is in danger... Especially in combination with the risks for the mother the chances for the baby are very low.

Sunday August 25: We were told it may not be possible to wait until Wednesday with the next ultrasound (as planned). My wife's condition deteriorated rapidly.

Monday August 26: my wife got the next ultrasound in the morning. The growth of the baby was small. The flow of blood through the umbilical cord decreased. We knew already what was going to happen.
In the afternoon the doctor confirmed: because of my wife's health and the very small chances for the baby, we were advised to terminate the pregnancy. The advise was also to take some time for this.
Tuesday morning we started this, the first pill was heartbreaking.
Wednesday this continued with much more pills.

Thursday around 2:45 AM our daughter was stillborn. She is very small, with a pretty head and an alien body. Exactly as we've seen on the many ultrasounds. She's even lighter than expected, which luckily confirms the choice to terminate the pregnancy.

Thursday/Friday: my wife's condition gets better already. Thursday she still got about 20 pills, but the dose is getting a bit lower. After 48 hours the magnesium I.V. can be removed if she stays stable, the expectation is she can go home after about five days. When she is released from the hospital we'll cremate our little daughter.

Even here in the specialized hospital, this is a rare scenario. We went to the midwife for a tummy ache 2 weeks ago, but it now feels like we've been here for months.
RemcoNL
Registered User
 
Posts: 3
Joined: Wed Nov 13, 2013 03:48 pm

Re: We lost our baby to severe pre-eclampsia and HELLP

Postby angieb » Fri Nov 15, 2013 11:32 pm

I am so sorry for your loss.

My story is very similar (problems started with genetic testing being red-flagged, then she was smaller than normal, then the pain and HELLP syndrome soon after...we delivered by emergency c-section at 23+2...my pain went undiagnosed for a couple weeks since my bp was normal or I probably would have been delivered sooner.)

I have since gone on to have two healthy pregnancies- a 36 weeker and 37 weeker with no pre-e or HELLP. (I was on low dose aspirin, lovenox, and monitored very closely by my OB and MFM.) Subsequent pregnancies are terrifying but in many cases uneventful. You definitely need a great team of doctors you trust.
Me (29) DH (30)
#1-Olivia Caetlyn-9-28-09-9-28-09, 23+2 wks, emergency classic c-section, class I HELLP, IUGR
#2- Lucas Oliver (rainbow baby)- April 2011, 36+2 wks, HELLP and pre-e free! (lovenox and LDA pregnancy)
#3-Matthew, late October 2012...mostly normal, 37 wks, (lovenox and LDA again)
My blog: http://www.butterflies-and-rainbows.blogspot.com/
angieb
Registered User
 
Posts: 1191
Joined: Mon Sep 28, 2009 01:38 am

Re: We lost our baby to severe pre-eclampsia and HELLP

Postby caryn » Sun Nov 17, 2013 12:40 am

I am so sorry to hear this. :(

It is not unusual for pregnancies with severe preeclampsia to have the first tri screening come back with a high risk of abnormalities, but for there to be no abnormalities on ultrasound or in genetic screening. Levels of hCG and PAPP-A are altered because the placenta is behaving outside the normal ranges.

Please ask any questions that would help you to make more sense of this. Again, I am so sorry.
Science! The articles you don't want to miss:
The Preeclampsia Puzzle (New Yorker) and Silent Struggle: A New Theory of Pregnancy (New York Times)
Looking for recent articles and studies? Lectures from researchers?
A chance to participate in research? For us on Facebook or Twitter?

Caryn, @carynjrogers, who is not a doctor and who talks about science stuff *way* too much
DS Oscar born by emergent C-section at 34 weeks for fetal indicators, due to severe PE
DD Bridget born by C-section after water broke at 39 weeks after a healthy pregnancy
User avatar
caryn
Forum Moderator
 
Posts: 10099
Joined: Fri Jun 25, 2004 06:36 am

Re: We lost our baby to severe pre-eclampsia and HELLP

Postby atvlady » Sun Nov 17, 2013 01:34 pm

I'm so very sorry to hear of your loss, and the event of PE and HELLP. I had a Daughter at 20+1 that lived 80 minutes. I too had severe PIH, severe PE and severe HELLP. My placenta was also tearing off the uterine wall. What happened to your wife is so very similar to what happened to me. You've came to the right place for help, support and advice.
Delissa (38) Darrell (45)

1-Rissa-Janelle "Darren" King 20+1 June 6, 2009 10:33 p.m. to June 6, 2009 11:53 p.m. 6.8 ounces. Severe PIH, Severe Preeclampsia and Severe HELLP. No diagnosed underlying condition.

2-TTC as of August 30, 2010
8-15-2011 Now infertility is a issue. We will be doing IUI.
atvlady
Registered User
 
Posts: 1000
Joined: Mon Jun 08, 2009 01:36 pm
Location: Pulaski, VA

Re: We lost our baby to severe pre-eclampsia and HELLP

Postby RemcoNL » Mon Nov 18, 2013 05:18 am

angieb wrote:I have since gone on to have two healthy pregnancies- a 36 weeker and 37 weeker with no pre-e or HELLP. (I was on low dose aspirin, lovenox, and monitored very closely by my OB and MFM.) Subsequent pregnancies are terrifying but in many cases uneventful. You definitely need a great team of doctors you trust.

This is the kind of thing we hope for. But after such an unlikely scenario it's hard to believe we'll be on "the good side" of the odds for the next pregnancy.
Asprin is already on the list of medication to take during the next pregnancy. Lovenox is not (yet?). We are still waiting for the results from the test for APS-syndrome. Luckily we have a very nice gynecologist who "will stand next to us", and she has close connections to the specialized hospital.

caryn wrote:It is not unusual for pregnancies with severe preeclampsia to have the first tri screening come back with a high risk of abnormalities, but for there to be no abnormalities on ultrasound or in genetic screening. Levels of hCG and PAPP-A are altered because the placenta is behaving outside the normal ranges.

I never knew this! When my wife was hospitalized we were told the chances of trysomi 18 or 13 had increased from 1:187 in the first trimester to 1-10% (an educated guess from the gynecologist). But I never knew the increased risk in the first trimester could also mean an increased chance of PE.

atvlady wrote:I had a Daughter at 20+1 that lived 80 minutes.

This would have been our next big fear. In a way we are glad our daughter died safely inside her mother, but there would have been a chance to come out alive. A month later (at the check-up) we asked our gynecologist if she would have suffered. He said the pills stop the blood flow, which leads to unconsciousness, coma and death.

You've came to the right place for help, support and advice.

Thank you (and the others above)!
Last edited by RemcoNL on Tue Nov 19, 2013 01:45 am, edited 1 time in total.
RemcoNL
Registered User
 
Posts: 3
Joined: Wed Nov 13, 2013 03:48 pm

Re: We lost our baby to severe pre-eclampsia and HELLP

Postby angieb » Mon Nov 18, 2013 11:41 pm

RemcoNL wrote:
angieb wrote:I have since gone on to have two healthy pregnancies- a 36 weeker and 37 weeker with no pre-e or HELLP. (I was on low dose aspirin, lovenox, and monitored very closely by my OB and MFM.) Subsequent pregnancies are terrifying but in many cases uneventful. You definitely need a great team of doctors you trust.

This is the kind of thing we hope for. But after such an unlikely scenario it's hard to believe we'll be on "the good side" of the odds next pregnancy.
Asprin is already on the list of medication to take during the next pregnancy. Lovenox is not (yet?). We are still waiting for the results from the test for APS-syndrome. Luckily we have a very nice gynecologist who "will stand next to us", and she has close connections to the specialized hospital.


I definitely understand that. My doctors gave me a 70% chance of getting preeclampsia in a subsequent pregnancy, and a 12% chance of getting HELLP again, and at my first prenatal appointment my OB told me how she just really wanted to get me to 28 weeks because the odds of the baby's survival are so much higher then. Never in my wildest dreams did I think we could make it to 36 and 37 weeks, with nearly full term babies with no NICU time at all, but we did. Getting through the next pregnancy is a lot like the grieving process (which I do not really recommend trying to get through both at the same time, we didn't wait so long intentionally, but now I'm glad it was nearly a year later before I got pregnant again because in hindsight I really needed that time to grieve). Anyway, you just have to take it one moment at a time. The large majority of people with very early cases of preeclampsia that I've seen on this forum over the past 4 years, have done very well in subsequent pregnancies, with more stories similar to mine than not.

For what it's worth, my MFM decided to put me on lovenox for subsequent pregnancies even after all my blood clotting disorder testing came back normal. They are suspicious that I have a blood clotting disorder that there isn't a test for/is not yet discovered/etc. I don't know that it made a huge difference, though, I wasn't on it as much with my third pregnancy due to other complications and it still was fine.

I am glad you have a good doctor, although if they are not someone who specializes in high risk pregnancies (in the US, high risk pregnancy specialists are either Maternal Fetal Medicine specialists (aka MFM's) and perinatalogists. You should meet with someone from high risk before trying again so they can decide if there are any other tests or anything they want done before another pregnancy, any meds they want started before conception, etc.
Me (29) DH (30)
#1-Olivia Caetlyn-9-28-09-9-28-09, 23+2 wks, emergency classic c-section, class I HELLP, IUGR
#2- Lucas Oliver (rainbow baby)- April 2011, 36+2 wks, HELLP and pre-e free! (lovenox and LDA pregnancy)
#3-Matthew, late October 2012...mostly normal, 37 wks, (lovenox and LDA again)
My blog: http://www.butterflies-and-rainbows.blogspot.com/
angieb
Registered User
 
Posts: 1191
Joined: Mon Sep 28, 2009 01:38 am

Re: We lost our baby to severe pre-eclampsia and HELLP

Postby RemcoNL » Tue Nov 19, 2013 01:57 am

angieb wrote:Anyway, you just have to take it one moment at a time.

That is one of considerations indeed. We don't want to wait too long (my wife just turned 33), but we also don't want to do it too soon. Our next gynecologist-appointment is 4.5 months after giving birth, we'll see from there.

I am glad you have a good doctor, although if they are not someone who specializes in high risk pregnancies (in the US, high risk pregnancy specialists are either Maternal Fetal Medicine specialists (aka MFM's) and perinatalogists. You should meet with someone from high risk before trying again so they can decide if there are any other tests or anything they want done before another pregnancy, any meds they want started before conception, etc.

I'll bring this up again at our next appointment. Basically the specialized hospital gave us the choice: go there for checkups or to our local hospital. For practical reasons we choose the nearby hospital, if anything comes up we'll be sent to the other hospital.

We live in the Netherlands BTW.
RemcoNL
Registered User
 
Posts: 3
Joined: Wed Nov 13, 2013 03:48 pm


Return to Ask the Experienced

Who is online

Users browsing this forum: mamc2003 and 4 guests