I started writing this shortly after we received Penelope’s final autopsy report. However, I still struggle with whether or not to share our ‘why’…the cause of death. I say that because there was no peace in the answer we received. I’m upset with the doctors that didn’t detect her cause of death. There will probably be bitterness in this post as I write, but that's how I feel. Yes, there is a medical explanation, but it just becomes a frustrating conversation in my head when I think about it:
Why wasn’t this detected sooner?
Why wasn’t this detected at all?
Could we have done anything different?
Did medicine fail us?
All of these questions have been answered, just not with any answer I wanted.
**Camden and I weren’t sure if we wanted to have an autopsy done on Penelope. We were told we had a 15-20% chance of anything being found.**
I received a call Thursday, April 27, 2017 from my doctor. He had received the final autopsy report (enter emotional roller coaster all over again). He was explaining that the placenta was sent out for a second opinion. It was noted that there were no blood clots or clotting blood in the umbilical cord at her time of death. The conversation continues on, the report came back from the other pathologist, she had a HYPOcoiled umbilical cord. An undercoiled umbilical cord. What probably happened, was during labor, the umbilical cord was compressed causing a decrease or stopped blood flow to Penelope. Therefore, decreasing or stopping her oxygen supply. She died during labor. This new information that overwhelmed me while on the phone. I tried to keep my composure with my doctor while talking through the tears streaming down my face. I lost it after he hung up. Floods of "what ifs" and "whys" consumed my thoughts.
What is a HYPOcoiled umbilical cord? Not to be confused with a HYPERcoiled umbilical cord which is more common. In a hypocoiled umbilical cord, the blood vessels in an umbilical cord don’t have enough coils, making it a higher risk for compression (at least that is how I understood it). Try Googling it, you’re not going to find much information about it, because there isn’t that much information about it. Google will try to autocorrect HYPO to HYPER. It’s a term many medical professionals that I’ve encountered aren’t aware of, sending them off to do their own research only to return empty handed or with the same information I’ve already been told.
Is it genetic? They aren’t sure
Will it happen again? Not that anyone has encountered or read about
Why does it happen? No one knows
Are babies that are born with it survive? Yes
Can it be detected? Yes, if they’re looking for it
In search of any information I could get my hands on, I turned to Google. Surely there must be some kind of information out there! According to obgyn.net “In any case, all cases of hypocoiled cord discovered on sonography, must be followed closely and repeatedly to exclude and prevent fetal morbidity and mortality.” Mine was never detected, but it is detectable! I read multiple moms on forums doing the exact same thing I was doing, looking for more information. The only difference was, their doctor had detected it at their 20+ week ultrasound. Something my doctor replied with that they were "lucky". He also informed me at my final appointment that Maternal Fetal Medicine doctors don’t look for hypocoiling of the umbilical cord because the occurrence is extremely rare. Shouldn’t they be the ones to detect it regardless? I know that Maternal Fetal Medicine doctors work with high risks pregnancies, and I was not a high risk pregnancy. However, they are trained professionals who look for and monitor abnormalities during a pregnancy. I remember thinking at our 20 week ultrasound, if there’s anything wrong, they are going to be the people to find it.
Aren’t there signs and symptoms?
Yes, there are a few. I didn’t have any of them. First, there’s preterm labor. I went into labor at 41 weeks with Penelope. Next, low birth weight. She weighed a healthy 7 pounds, 11 ounces. Another one is slow growth, she always measured right on track. There was never an indicator that something was wrong.
Aside her umbilical cord not having enough coils, it was also incredibly short. On average, an umbilical cord is 55 cm, about 21 ½ inches. Naturally, the length of an umbilical cord varies from baby to baby. It could be longer, it could be shorter. Penelope’s was 17 cm. That’s about 6 ½ inches long. Something like a short umbilical cord the ultrasound tech or doctors would have seen! Not at all, everything in the reports said “normal”. Thinking back now, this is why she never completely dropped. I was never worried about it because you hear that babies can drop down up until birth. Also, this makes sense as to why she preferred the right side of my uterus (that’s where the placenta was located), she didn’t have the ability to squirm around.
I could go on and on about how mad I am that neither of these were detected by the people I’m supposed to trust with the health of my baby. I am mad. However, I am reminded that doctors are human. As we all know, humans aren’t perfect. It’s a bitter truth to have to hold on to.
So now what? What am I going to do with this unhelpful information? I am going to get a second opinion. I want to know if either were detectable. I'm thankful for family members in the medical community who are willing to look at her ultrasound images. What will I do with the information they give me? I don't know yet. The best information would be that they weren't able to easily detect or were unable to find the abnormalities. Worst case would be they are able to find them right away. Then what? I don't know. What I do know is that I will make sure that the umbilical cord is looked at thoroughly during any ultrasound scans for all of our future babies.
Any other information I gathered from her report stated what I already knew...she was perfect.