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Author Topic: Preterm birth and loss at 27+4  (Read 180 times)

wren

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Preterm birth and loss at 27+4
« on: January 13, 2018 at 11:02 PM »
Hello everyone,

My first child, a son, named Oskar was born due to spontaneous preterm labor at 27 weeks and 4 days and passed away when he was a week old. I wanted to share my story of preterm labor to see if anyone had a similar experience, and if they went on to have a successful subsequent pregnancy.

My son, Oskar was conceived via IVF after trying naturally for about a year. I was 38. I was extremely concerned about preterm labor because both my sisters had gone into preterm labor at 34 and 35 weeks respectively with their first children (both their sons are now healthy pre-teens). But despite being an IVF pregnancy, over 35 with a family history of preterm labor, I was considered low-risk. I had a BMI of 21.5, ate balanced healthy meals, and walked and took a prenatal exercise class while pregnant. We did the first trimester scan, free-cell DNA testing, and the 20 week anatomy scan. At my 20 week scan my cervix was 3.2 cm but the doctor said that was normal.  At my monthly appointments, my doctor told me everything looked great. 

But I didn't feel great while pregnant. During my second trimeseter I was so fatigued that there were days at work I'd fall asleep in the bathroom stall while peeing. I am a lawyer, we relied on my health insurance and I made more than my husband so I had planned on working through my pregnancy. My job was, in the words of my therapist  an "abusive environment" and besides dealing with really difficult people (a lot of people who yelled), it was stressful. Still, I limited my time at work to 9 am- 7 pm and didn't work late at night. Work caused me a lot of anxiety and I had terrible insomnia both before my pregnancy and during it. I told my doctor about work stress, my fatigue and insomnia. She told me fatigue and insomnia were normal and that women had babies in war zones with no complications. She suggested I walk more to help me sleep better.

At 25 weeks I was diagnosed with gestational diabetes. My doctor wasn't worried and said it was fairly common for older women. I made sure I ate 5 times a day, walked after meals and ate whole grains, veggies etc. At about 25 weeks, I also felt the pressure against my cervix increasing, and my doctor said this was normal since the baby was head down. The pressure wasn't constant and I stopped worrying about it. I've gone over my symptoms the week before I had Oskar a million times, and the only thing I felt was increased pressure.

The day Oskar was born, a Saturday, I woke up with really mild period-like cramps low down in my belly. I almost couldn't feel them when I woke up but after a cup of decaf coffee, they got a bit stronger. They came and went, and first my husband and I thought they might be Braxton Hicks contractions. They didn't seem very regular nor were they were very painful. Still, we called the nurse who told us not to worry, and to come down to triage.

I ate a little breakfast, showered and we went to the hospital. The cramps were so mild that I didn't think I had anything to worry about and the nurse had been so reassuring. When we got to the hospital, they were a little stronger and I probably had about 4-5 every hour. I was 1 cm dilated. I was given drugs to stop my labor and a shot of steroids, and told that I'd need to stay in the hospital a few days. Within an hour or so, I was 4 cm dilated and I was told that I would deliver that evening. About 8 hours after getting to the hospital, I was fully dilated. My membranes were still intact and my water was manually broken, but I delivered vaginally and the whole process was less than an hour.

My son was born breathing on his own and was 2.4 pounds. The first day of his life he was breathing with a little mask, but then his lungs collapsed. We had been told that this was likely because preemies have a "honeymoon" period and then get very tired. He was intubated and also needed a blood transfusion. That first night was scary, but the next day, he was stable and the doctors in the NICU (which was one of the best in the country) were very positive. They did warn us that the big risk was brain bleeds, and that they would do a scan at 7 days. During the first few days he was kept very still so not to cause any brain injury. Oskar was feisty, would hold our fingers, kick his arms and legs in protest when his diaper was changed, and was beginning to digest my milk which I pumped every 3 hours. We were really positive.

The brain scan however revealed severe grade 4 brain bleeds on both sides. The autopsy revealed that they were more severe and deeper than the scan had shown, and had occurred 2-5 days before his death. After the scans, we made the very difficult decision to discontinue life support, and Oskar was removed from the ventilator. We held him in our arms for an hour while he died. Our NICU doctor told us that given how healthy Oskar was except for the fact he was preterm, he though that a full dose of steroids would have resulted in a different outcome. But because our labor was so quick, Oskar would not have even gotten even one dose of steroids (it takes a while for the steroids to make its way to the baby from the mother).

My placenta was examined, and I had a lot of other tests done after Oskar's death. The doctors have not been able to give us a reason for my preterm labor. They do not think it was my cervix and I did not have an infection. I am convinced that the stress of my job contributed to it, but the doctors tell me that there's no real medical evidence for that.

I am now 16 weeks pregnant with our second child. I am closely monitored, and I will have scans every 2 weeks to check for changes in my cervix (at my scan yesterday, my cervix was 3.5 cm). I am on low dose asprin and also just started a weekly Makena progesterone shot. While I did go back to my job after Oskar's death, I moved into a less stressful role. Still, I decided to resign at the end of this month to eliminate work stress. I swim instead of walk (my doctor does not recommend bed rest and suggests I keep exercising), continue to eat very healthy meals and see a therapist to help with my anxiety related to this pregnancy.

I'd love to hear from people who might have had similar unexplained preterm labor. Any advice for this pregnancy?I don't think I will survive the death of another child. I miss Oskar every day.

Thanks!



« Last Edit: January 14, 2018 at 02:13 AM by wren »

EnglishRose23

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Re: Preterm birth and loss at 27+4
« Reply #1 on: January 16, 2018 at 10:13 PM »
Hi Wren,

Hugs to you <3 it sounds as though your loss still feels very raw. I've been there, I still am there. It's the sort of thing that can never leave you, but as more time passes you get better at living with it. Our daughter died in the NICU after being born at 24 wks 1 day. I compare the recovery to losing something like your sight or your legs in a horrific accident...you'll never get your sight back, you will live in the darkness the rest of your life, but after enough time has passed you get used to being blind, better at feeling your way around, your other senses becoming more attuned.

My preterm birth was more explainable than yours, my uterus had/has a big wall down the middle called a septum that is associated with high rates of miscarriage and preterm birth even though they don't understand why some women with my condition carry full-term and others are a walking disaster like me. I still questioned every single thing I did during that pregnancy, was it helping my dog onto the table at the vets, was it not keeping my allergies under control in the summer, would bedrest have helped?

I don't think my story is very reassuring, but my second child made it to 28 wks 6 days, and is a happy thriving preschooler. I am a better mother for my loss, you don't complain about the sleepless nights with an infant when you've experienced the alternative. I was sad and surprised you lost Oskar as a 27 weeker...the statistics for survival are usually pretty good by then, if you made it that far again I hope the odds treat you much better. The stress and the fear of pregnancy after a loss are so real though, when I was pregnant with my son I kept thinking to myself, should I buy the cemetery plot next to my daughters just-in-case? I knew I'd be mad at myself if I didn't and couldn't lay my children to rest next to each other. We almost lost him so many times. We didn't do a baby shower because I didn't want a house full of baby things if we didn't get to bring our child home.

If it helps I think you are the best possible candidate for the Makena shots helping you get to term. They still give it to women like me with previous preterm births, but it is less effective when there is an identified underlying cause like a septum or an IC. Did you receive magnesium with your labor? At my hospital they routinely give that to reduce the risk of brain bleeds in preemies. You would remember it if you had, makes you feel like you have the flu. If not maybe ask about it for next time.

It's good you are getting to talk to a therapist. I would too if I could afford it, I'm 9 weeks along (with complications) into another high-risk pregnancy and it's been triggering the PTSD flashbacks from my prior nightmare pregnancies.

Wishing you a healthy pregnancy and full-term baby <3


wren

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Re: Preterm birth and loss at 27+4
« Reply #2 on: January 17, 2018 at 07:30 PM »
Hi EnglishRose,

Thank you for your thoughtful reply. I am so sorry for the loss of your daughter but am glad to hear that your son is doing well.

I did receive Magnesium Sulphate to stop my labor and also received steroids to help my son's organs/brain develop faster and prevent bleeds.  Unfortunately, I delivered him about 4 hours after receiving steroids so they wouldn't have helped. A full dose is usually 2 days since it takes that long to get from the mother to the baby in utero. The NICU doctor at the autopsy told us that even 2 days of steroids would have resulted in a dramatically different outcome. I didn't however, know to go into triage until I had cramps. I had no symptoms of preterm labor until the morning of my son's birth.

I am on Makena for this pregnancy and have very different care. It still upsets me that despite a family history of unexplained preterm labor, I was considered low risk and not offered extra monitoring for my first son, but this time I will be monitored on a weekly basis. I hope it makes a difference.

Wishing you a healthy, gentle pregnancy.


Freshview

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Re: Preterm birth and loss at 27+4
« Reply #3 on: January 18, 2018 at 02:54 PM »
I think you’re both incredibly brave. Thank you for sharing your stories. Not having answers is the most frustrating and paralyzingly thing.
I lost my son at 24+0 in October. He was our first successful IVF pregnancy. We have no real answers either. I had a small septum reduced in 2015. That was my only real risk factor.
Can I ask you both, what was it that made you able to suppress your fear and try again knowing it could all happen the same way. Wren, your description of taking Oskar off life support after his brain bleed mirrors my experience with Jonas exactly. He was 8 hours old. I also don’t know if I’d survive that again.

EnglishRose23

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Re: Preterm birth and loss at 27+4
« Reply #4 on: January 19, 2018 at 09:51 PM »
Hi Wren,

I was mad about my care too during my pregnancy with my daughter. It's like they don't treat problems seriously until you've already been through a loss. They'd identified my uterus had a deformity but it was initially misdiagnosed as a lower-risk bicornuate uterus, and I'd had heavy bleeding all my first trimester and most of my second and they still didn't consider me "high-risk" enough for extra montioring. Makena shots can't even be prescribed to women without a previous preterm birth. I'm glad you are recieving better care this time round, I hope it makes all the difference. I hadn't realized unexplained preterm labor could run in the family so thanks for bringing that up, my sister is TTC so I will make sure she warns her dr about the history on my side.

Hi Freshview,

So sorry for the loss of your son. To answer your question it was my husband that talked me into it really when we tried again after losing Sophie, I wanted to adopt, but he bonded so quickly with our daughter that he wanted that sort of love again for a child of his own. When we talked about the decision, we tried to think about how we might feel about it when we were 80 yrs old. I know we would have deeply regretted not trying again for a child no matter how difficult the process was. I also felt angry too that something like fear could make a decision for me, when we decided to try again it almost felt like rebelling against my own nightmares. It was so hard with our son because the pregnancy was of course complicated again and we feared the worst every time I went into premature labor. Then when he was born we had to go back into the exact same NICU where our daughter had died, back to the same doctors and nurses. The room they had there for moms to pump milk in private was the room they had let us hold our daughter in while she passed away, and I couldn't bring myself to go in there the whole 11 weeks our son was there and instead pumped my milk publicly by my sons incubator. When he came home he was still having breathing problems and would literally stop breathing and go limp and pale and need me to resuscitate him 8 or more times a day the first few months. It was a living nightmare having my second child die in my arms over and over again.

But he didn't die, he lived and that made it all worth it, it made every last horrific experience I went through to get there worth it. It made it so worth it that here we are again, trying all this again despite my dismal track record. It also means my daughter will be remembered beyond our years. Our son knows who she was, likes looking at her pictures and visiting her grave and thinks of her as his sister even though he never got to meet her. And you know you are strong enough for this because you have already done the hardest thing, having survived the loss of a child there is nothing life can throw at you that you won't be able to cope with, and even in the worst case scenario where we lose another baby we know we will survive it because we have already proven we can come out the other end of that dark tunnel. I had a great-aunt, who had four babies, and all four of them died, one living a whole week, the others dying the first day (it was a rhesus negative issue before drs knew what that was). She ended up adopting a 5th child whom she loved dearly. The losses didn't break her though, they made her stronger. She was a tough poetic woman, who lived to be 102. The last thing she did before she died was knit a baby blanket for my newborn son, she was so so happy for me that he lived. I think of her whenever I think life has dealt me a  tough hand and remember that it's up to me what I do with that experience.

Freshview

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Re: Preterm birth and loss at 27+4
« Reply #5 on: January 20, 2018 at 11:24 AM »
Englishrose,
Thank you. Your story and that if your aunt’s are very empowering and inspiring.
My partner is still leaning toward surrogacy, but says he’s not saying no to us trying again. Well, me. He’s already done his part. :)
All the best in your pregnancy.

wren

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Re: Preterm birth and loss at 27+4
« Reply #6 on: January 22, 2018 at 10:09 PM »
Dear Freshview,

It does sometimes seem crazy to me that I wanted to try again, but I did. I didn't want to give up and I wanted to have some hope. The need was so strong even though I had (and have) so much fear. I can't really explain it.  What gives me hope that this pregnancy will be different is that I am on Makena, and am being monitored very closely by a team of high-risk specialists. I am also going on medical disability starting at 22 weeks and will not have work stress to deal with. You and your husband will do what's right for both of you, and I wish you all the luck.

EnglishRose23,

There's a lot of evidence that preterm birth has a genetic component. This article discusses recent research.
https://www.marchofdimes.org/research/links-between-genetics-and-preterm-birth.aspx