by RemcoNL (4 Posts), 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.