From the moment our babies are born, us moms worry. For the most part, though, these worries aren’t debilitatingly overwhelming. But not every mom is so lucky. And if there's a problem with your baby’s health, it's safe to assume you'll inevitably find yourself in a terrifying tailspin, with the fear of losing your baby taking over completely. Personally, I think it’s important people recognize the mothers whose babies almost died, and perhaps even more important that we listen to their stories and their advice. Not only can the experiences of others help you if you find yourself in the same position, but they might even help prevent similar situations in the future.
I didn't have a "typical" labor and delivery when my son was born. I was already on edge throughout my pregnancy, too. I had lost his older sister to prematurity, so it was hard to imagine that everything would be fine once he was born. But when we finally made it to 40 weeks in my pregnancy, I figured a complication-free labor and delivery was a sure thing. Unfortunately, my son aspirated meconium at birth and developed persistent pulmonary hypertension (PPH). The first week of his life was touch and go and, quite honestly, the scariest time of my life, save for the few hours his sister was alive. I felt horribly guilty about all of it, too. I had changed medical providers close to the end of my pregnancy, and attempted a home birth after I had been convinced by several folks around me that it wouldn’t be a problem. After all, his sister had only passed away due to my preterm labor.
So, what's my biggest takeaway from this horrific, terrifying, overwhelming experience? It's the same thing I tell other mothers: changing plans near the end of your pregnancy is simply a bad idea. And more than that, that mothers need to seek out and be able to obtain proper mental health care throughout their pregnancies. I know I was still suffering with the post traumatic stress disorder (PTSD), as a result of losing my daughter, and that it directly influenced my decisions. I was so scared of being stuck in another hospital and not getting to take my baby home, that I gave into a risky idea, trusting people I barely knew to help me deliver my baby at home. I’m not against home births, by any means, but now I know they're not for me.
The only other thing I would want moms to know is to stop blaming themselves. Things happen, even in the most controlled environments. There’s absolutely a chance that my son would have developed PPH even if he had been born in the hospital. There’s simply no way to find out exactly what caused it. Then again, maybe something worse could have happened. The point is, I was doing the best I could, trying to give my son the best chance to come into this world safely. There is no need to blame myself for what happened, and other mamas shouldn’t blame themselves for what happens before, during, or after their labor and deliveries, too. I spoke with several other mamas who almost lost their babies and asked them what they’d like other to know. This is what they had to say:
“My rainbow was born last November. She gave me one good scare while I was pregnant. I was 23 weeks, six days. Literally right on the cusp of viability. She had become regular with her movements. If I couldn't feel her in the morning first thing, then I usually could once I got to work and had some ice water. Well, of course, here I am just barely 24 weeks (and just days away from my stillborn son's first birthday), and I get to work and I can't feel her. If anything, it's like the slightest, tiniest movement. I can't even tell you how much water I drank. It was a lot. Still nothing. I went into a backroom at work to call the [doctor’s] office, sobbing. Finally, I got someone and they told me to go straight to the hospital. I tried calling my boyfriend a bunch of times, but he was sleeping and his phone was in the other room.
I sped home to wake him and I told him, 'We need to go right now. I haven't felt her move!' We got there as fast as we could and all I could think of was how I couldn't have her there. I couldn't have her now. I couldn't risk needing to be shipped one and a half hours away to the nearest children's hospital for a C-section to hope she might survive. I started to panic about having another stillborn. My boyfriend reassured me the whole way there.
Sure enough, as soon as we put the monitor on her, her heartbeat was there, and she was super wiggly. They kept us for a little while to observe, but then sent us home. The rest of the pregnancy, she was good to us and came out healthy. I'll never forget that panic and anxiety hitting me like a ton of bricks, thinking that I was gonna have to bury another kid.
I guess what I would say to other moms about this experience is that no matter what, in a pregnancy after loss, you're gonna have a lot of anxiety and fears and it's best to just trust your gut. Go get checked out, even if it turns out that your kid is just being a stinker and playing tricks on you.”
“We thought we were going to lose [our son] in utero around 25 weeks gestation. He was barely growing. Some weeks it was so little that the maternal fetal medicine doctor said it could arguably just be margin of error. It was awful. There was a weird 'which is worse?' feeling, too, between not wanting to lose my baby and worrying about if he survived, what conditions he may live with.
He was born at 1 lb 4 oz and spent over 100 days in the NICU. He has since been readmitted twice. We don't think his situation is life or death anymore, though there's still a chance of a rare genetic disorder. But when you are sitting in the hospital with your baby hooked up to monitors and tubes and various forms of support, the worry never is completely out of your mind because if you've spent any time in a hospital at all, you know things can turn dark quickly.
I'd want other moms know it's OK to mourn the normalcy you don't have. It's OK to lament the ways life will be dramatically different. It's OK to feel helpless sometimes. And none of that is wrong or bad or weak. I also want people to know it's OK to call someone in a puddle of tears and just cry and say it sucks, because sometimes it really does. And after the tears, at least for me, there was always swell of relief that I could take on another day. Tears were cathartic for me.
[My son] is 6.5-months-old now. We are dealing with some potential pulmonary hypertension. They haven't officially diagnosed it, but they acknowledged his heart was looking a little larger on the one side. Such a stressor sometimes. I get jealous, or even a little miffed when I hear people talk about their NICU babies and [their stay] was like two days. Which isn't fair of me, but I don't think I'm enough away from it yet to be more rational or empathetic. Also, our son had intrauterine growth restriction (IUGR), which is why at 29 weeks he was the size of a 23-weeker, so I sometimes can't handle it when people complain about their small babies that were 4 lbs. My sister-in-law had a baby a week after us, one gestational week older, and she was 3 lb 7oz. All I could think about was how huge that was when, in reality, she was still a tiny baby. It's funny how the trauma changes you a little. I hope to get back to the old me but I am not sure it's a bell that can be completely un-rung.”
“I was sick. My body was dying. I delivered him while I was on life support. The doctors told me that to treat me would harm him and I needed to prepare for a stillborn child. Shortly after his birth, he was diagnosed with hydrocephalus — a buildup of spinal fluid in the brain. At three weeks (weighing 3 lbs 5oz), he had his first brain surgery. At four months, his second. At nine months, his third to place a permanent shunt.
I'm not sure if there was anything overlooked or what could have been done differently, but I blamed myself for not carrying him to term. The what-ifs still creep up on me time to time and I have to remind myself that he is my miracle child. It may not be much help, but to me, it's important for moms to know it's not always their fault. I fought like hell to keep him alive. It was an interesting time. I was fully awake during the whole ordeal. The sedation for intubation didn't work on me. He's my little fighter!”
“Having a preemie in the NICU after having a loss is terrifying, but also incredibly joyous. [I think I'd want moms to know that] It's a strange existence to be fearing the worst that you already know far too well and, at the same time, be ecstatic that this child is alive and here. I looked around at the other mothers and realized I must look nuts to have a huge smile on my face as I looked at my tiny — less than 2 lb — daughter. She is beautiful, just like her sister, and she is here.”
“I had a miscarriage with my first baby, and got pregnant just a few months later. It was scary, but we had great doctors who were monitoring everything. At around four months, I was told my cervix was shortening too much. I could either get a cerclage or go on bed rest. We chose bed rest and I stayed in bed the rest of the time pretty much. It was really, really hard. And then my baby was born at 32 weeks and it was not looking good for her (the doctors kept giving us all the worst-case scenarios). But fortunately she spent some time in the NICU and got bigger and stronger. I would want moms to know to try and stay positive, even when the news is horrible. Because there’s always a chance things will work out. And if they don’t, at least you tried your best and did everything you could for your baby.”
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