Friday, September 20, 2013

Q & A Session #1: Loss of Our Lydia


First of all, thank you for the wonderful outpouring of support about my last post! I wrote it not to tell the world, "Look at me! Look how great I am for surviving this terrible tragedy!" But to say that God is good and can make beautiful things out of our "yucky parts".

Another motivation was to let other people know you are not alone. I think its easy to think when life gets hard to think we have nowhere to turn. But that's not true. I felt VERY alone through much of the past 3 years. However, I realized recently if I had shared my burden from the beginning of this journey, although still so hard, the process may have been just a little bit lighter to bear.

So, in the spirit of sharing my burden, I thought I'd do a few Q&A sessions. I was asked a lot of questions regarding Lydia's birth/death, my relationship with my spouse and how my living children have been coping, just to name a few. Over the next few posts I hope to answer these questions the best I can.

In this post I'll write about the specific questions I received about Lydia, her pregnancy and birth/death.

How far along were you when you found out she died?
I was heading into my 18th week of pregnancy. Lydia died sometime the week prior.

Was her death a complete shock?
Well, yes and no. Yes because I don't think you ever really expect a loss to occur  - especially so far into a pregnancy. But no, because I did have a bit of "mother's intuition". I noticed that my abdominal growth had plateaued the few weeks prior. In fact, I remember telling my husband, I felt like I wasn't growing at all. (And you can see from the photos, I wasn't. I look smaller in the 18 week photo than I do in the 15 week photo.) I also had only felt her kick a few times at that point, but I assured myself it was because I wasn't that far along. and there would be many more months of kicking joy to follow. I also had started losing weight. I attributed this to the fact that I had gestational diabetes. I was on a very strict diet and thats why I wasn't gaining weight. I tried to compensate by upping my caloric intake. It didn't help. I weighed about 10 pounds less after delivery than when I found out I was pregnant.

Was her loss a miscarriage or stillbirth? 
Technically, and medically speaking, her loss was a second trimester miscarriage. Had she been "born" at 20 weeks, she would have been considered a stillborn.

Why do you refer to her as a stillborn?
This is absolutely out of personal preference. While we were 2 weeks shy of her loss being considered a stillbirth, because of how far along I was, I had to be induced. Yes, you read that correctly.

I checked into the hospital Labor & Delivery and was induced. I labored for almost 9 hours. I delivered her. My husband and I got to hold her. They gave us photos of her along with her fingerprints and footprints. They encouraged us to name her and mourn her loss. For this reason I consider her a stillborn baby.

How was she so tiny?
Firstly, I was only halfway through my pregnancy, so she wasn't the size of  full-term baby. Secondly, we didn't know at the time, but because of the reason for her death, she had intrauterine growth restriction (IUGR).  Basically her weight was really low for her gestational age. A baby at around 17 weeks gestation (when she died) would have been approximately 5 1/2 inches long and 6 ounces. She was 5 1/2 inches long and only 1.9 ounces.

What happened to her? Why did she die? How do you know?
There was an autopsy performed. This is pretty standard in a loss that is after the first trimester -especially if the baby is chromosomally normal. Lydia died as a result of an umbilical cord accident. More specifically, she had a hyper-coiled umbilical cord. This is a little bit confusing, so bear with me, and I'll try to explain it in the most non-medical way I can.

Every normal umbilical cord has 2 arteries and 1 vein. As the umbilical cord begins to grow, the arteries inside create a minor twisting of the cord. Doctors really aren't sure why it is necessary, but it is vital for the outcome of the baby for this minor coiling to occur. If the coiling is too little, it can be fatal. If the coiling is too much, it can be fatal. Our baby's cord had too much coiling.

So, how much is too much, you ask? There is a direct correlation between the length of the cord and the number of coils. It should be 1 coil per 5 cm of length. Our baby's umbilical cord length was 20 cm, which should have made it 4 coils. Lydia's cord had 18 coils. Because there were so many coils the umbilical cord was not bringing her the nutrition and oxygen she needed to survive. They also discovered that her placenta was 1/10 the size it should have been. This is thought to be in direct relationship with the compromised umbilical cord findings.

Was her loss preventable?
This question is assuming a lot. Technically speaking, if she had survived to 24 weeks and the compromised umbilical cord had been discovered, I could have delivered her early and they would have tried their best to save her (Babies born at 24 weeks of gestation have less than a 40% chance of survival). However, umbilical cord anomalies of this nature are really difficult to diagnose prenatally on ultrasound. They are usually only found if the doctor knows exactly what to look for. Considering most women only have one ultrasound during their entire pregnancy which is done around 20 weeks (the one where they determine the gender), no. Not really. Her loss was not preventable.

Is this loss related to the others?
I wish! And I mean that in a sincere way. If there was any direct relation, I think it would have made the process a little bit easier to bear. I mean, if we knew I would only keep having losses because of a specific genetic component, we could be assured that we should stop trying. But none of our losses have been related. In fact 3 of the 5 were completely random, isolated events not likely to ever recur. They were also like 1 in 10,000 chance they would have occurred in the first place. The other 2 losses were not investigated, so we have no known reason for them. Seriously, our luck sucks. That is a direct quote from the Geneticist we met with after her loss.

Wow. I covered a lot of detail in this post, so thank you if you are still reading! Hopefully I was able to answer the bulk of the questions you guys asked. Next post I'll be answering the questions asked about my relationship with my husband. So stay tuned!



2 comments:

  1. So, so sorry for your loss. I feel like I don't have anything I could say that would help. Just wanted you to know I care and appreciate you sharing all the insight you've learned from this difficult and painful experience.

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    1. Thanks Lisa! Thank you for sharing all your advice and insight on your awesome blog!

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