Will my baby live?

When I got that news that Mabel had low fluid, I truly understood that the prognosis was bad, but it was hard to really wrap my head around the idea that she might actually die. Part of the difficulty was that no one would actually say she was going to die. Obstetrics would hint, very strongly at it, but couldn’t tell me with certainty. Pediatric specialists wouldn’t comment at all- they all simply said we’d have to see when she came out.

At one point we met with a neonatologist that was finally a bit helpful in that respect. I had been getting weekly ultrasounds for several weeks when we saw him- had had one that day even, which at that point had shown anhydramnios, or no fluid at all. When he heard that, his expression became very serious. He too couldn’t tell us for sure our baby would die, but he was able to get across the point that he was not optimistic for our child. It’s possible he told me nothing new, and after several weeks I was finally able to really hear someone tell me bad news. But I think it was also helpful that he dealt with babies like Mabel. Before him, those giving me the dire prognosis were in OB- they didn’t deal with the baby when she came out, so I didn’t give them as much credit as I should have.

Despite my better understanding of her poor chances, I still remained hopeful. Perhaps it would have been easier if someone could have just told me she would die- her condition was incompatible with life. Then I might have reframed my pregnancy differently.

Later, when I was hospitalized, my midwives came by daily to check in on me. I had many visitors, and everyone tried to remain upbeat. I was pretty positive myself, finally feeling “safe” on continuous monitoring. But I had my moments too- I often just wished I knew what was going to happen (so I could prepare- I thought.)

One day when one of my midwives was visiting, we were having a more serious conversation- about the what ifs. Of all my care team, I talked to her most about the what ifs- what if my baby died? How do I be a midwife? How do I answer when asked if I have kids? She had given me the book “An Exact Replica of a Figment of my Imagination” that just felt so powerful and helpful at the time. For some reason, I could talk to her most easily about the hard stuff. Maybe because others would say- “don’t think like that!” or “no! Miracles happen! Babies surprise us!” or “you don’t know what’s going to happen, why plan for the worst?” But she wouldn’t. I suppose she was the perfect example of empathy. She would stop and really think about what it must be like to be facing such an unknown reality. On one of our visits in the hospital, I asked her “Can I ask you something honestly? Do you think my baby is going to live?”

“No,” she said softly.

And at that time, it was helpful. Partly because I had been asking- not simply being told. Partly because it was her- she wasn’t trying to get me to understand, she was simply imagining it for herself.

I recently saw her for a concern of mine- one that got me super nervous.   Leading up to my appointment I was calm, pushing away bad thoughts- but once I got there, I couldn’t hold back the tears. At the end of the visit, one she basically spent reassuring me, I stopped her and said,

“When I was pregnant with Mabel, I asked you if you thought she would live. You were honest with me. That was really important to me. Today, what do you think- will I be ok??”

“Yes,” she said softly, in that same tone of voice she used with Mabel.

And I believe her.

Do you have someone you trust to tell you the truth? Someone you can hear the truth from? Is there someone you look to for reassurance that everything will be ok?

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12 thoughts on “Will my baby live?

  1. I had a similar experience with the NICU doctors. There were around six that cared for Ander, and they all had different levels of positivity and negativity, which is quite understandable in the NICU – because some babies that are meant to die, live, while others who are meant to live, die. In many NICU cases, you really *don’t* know. But what that often meant was no straight answer. Even the best NICU doctors don’t want to give up on a baby (perhaps especially the best doctors). Fortunately, when it got to the point when it was really hopeless, there was consensus, which helped enormously in relieving our guilt. One nurse in particular kept reassuring us that there was really, really nothing else we could do. It does help. Because as parents, even when the doctors are clear and honest and tell you the chances aren’t good, you still hope, because you have to.

    • I bet that nurse who reassured you there was really nothing more to do was so helpful. The scariest thing to think about is what if we made a wrong decision for our baby. In pregnancy I thought about that all the time- what if we monitored earlier? what if we delivered earlier? and sometimes I question whether we should have even put her through as much as we did- but we had to, to know if she had a chance. I too soooo appreciate when the doc came and said it’s time to take her off the vent. I needed to be told and I greatly respect providers who have to say such hard words.

  2. I don’t have anything helpful or similar to contribute, I just wanted to say that this was a really beautiful piece, Meghan. Thank you for sharing it with us. ❤

  3. I trusted my provider that everything was fine, and she convinced everyone else on L&D to trust her as well – even when they weren’t quite sure what she thought was happening – but she was wrong wrong wrong wrong wrong… I will never forget the first time someone told me Sacha might die (after they finally realized he was sick, got an ABG and saw he was already irreparably acidotic from blood loss). I’m also so thankful to her for being honest and direct with me, so I could reframe my thoughts (even though it was far too late to change anything about the situation).

    • ugh- what a hard situation. to go from such confidence that everything is fine to a complete 180 that everything is not fine, far from fine, not fine at all! I’m glad she could be honest and direct- a hard thing for a provider to be during such a traumatic time. It still suck bigtime though.

      • Haha well, she wasn’t, she left… It was the neonatologist who re-assessed the situation and told me, when she finally arrived (about 2 hrs after Sacha was born, before I had met him, and too late for her to make any difference…)

      • well that’s disappointing! I would have hoped she have behaved differently after the sh*t hit the fan. I understand providers arent always right- but the key is giving good compassionate care after terrible news.

  4. I had a stillbirth, the Dr. couldn’t find a heartbeat at my final antenatal visit. Not with the doplar, not with the manual mega-phone thing they put to the ear…so I had to be sent to the ultra sound department, without knowing for sure if my baby was dead (“she could just be in a difficult to read position’ the nurse said) . The U/S dept was jam packed and I had to wait in line for a nerve wracking 3 hours – all the while hoping and praying was still alive. I had intermittent contractions and being a first timer, couldn’t tell them apart from actual baby movements. Looking back I agree with the Dr.’s decision to not be straight with me, because the only thing that kept me waiting patiently in line was hope she was still alive. The Dr. needed information from the U/S to decide the next steps..I think he had to think of a way for me to stay calm enough to do the U/S.

    • Oh. my. gosh. you had to wait for 3 hours not knowing??? holy cow. I have to take a deep breath just to imagine it. I am shocked I supposed because things are done differently in my practice- I cant find a heartbeat and I rush the pt directly to the hospital (labor and birth- if it’s beyond 16 weeks. otherwise to a sonographer in my office) where they will find out as soon as possible. In that scenario I think I too would be grateful to salvage a little hope just to get through the wait. For me if I cant find a heartbeat, I tell them just that “I’m having trouble finding a heart beat.” I tell tell them I’m worried (often tearfully) and I want to find out whats happening as soon as possible- but I also tell them I dont know for sure, baby might be positioned difficultly/ though I usually know that’s not the case, I need to get them to the hospital safely and even those 20 minute I feel like must be interminable. I try to give them enough hope just to make it there.

  5. Thank you for sharing your story. I am a first time mom and I am currently 24w4d pregnant with my son. I have been going to the doctors every two weeks for the past month and a half and his amniotic fluid has been low since I was around 17 weeks, today as I was leaving the doctors office I noticed she wrote anhydramnios. I have been trying to stay positive and pray that my baby will be okay and be born healthy, but it is really hard when my doctor today tells me that even if I have my baby he would only live for maybe a day because they can’t see his kidneys still (if he has any as the doctor put it).

  6. Beautiful story that is touching the lives of many others. We had twins and almost lost them so many times it’s crazy. One of them had almost no fluid and the other had like an Olympic size swimming pool of fluid. Both are so dangerous. Blessings 💗

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