Hidden Disorders and Charlie’s Web: How my ultimate loss led to my investigation of PPROM – PART 3

Five weeks old, and everything was about to change.

At 4am on July 21, 2017, PJ and I received a terrifying phone call. Every NICU mom knows no news is good news. Every night before I left the NICU, I would remind the staff to call me, and Charlie’s neonatologist would always respond with only if she was worried. Well that call at 4am was the neonatologist, and she recited those very words:

“Morgan, I told you I would only call if I’m worried and I’m worried. I think you and PJ should come up to the NICU now.”

Only eight streets away, yet the ride there seemed liked miles. PJ and I were both shaking the entire way – half asleep and so confused. I had left the NICU just four hours before, and she’d been stable. She’d been fine.

As we entered the NICU, there were even more machines surrounding our daughter’s isolette. She was maxed out on respiratory support and they were doing everything they could to keep her lungs open but they kept collapsing. She was being moved between the JET ventilator and the Oscillator ventilator, and now nitrogen oxide was being added to the mix. At this point, we were fluent in NICU language, and yet had no idea that this would be Charlie’s last NICU battle.

Within three days, she had maxed out three different blood pressure medications and was in a medically induced coma.

I will never forget being asked, “How aggressive do you want us to be?” My answer was and always will be, anything and everything that can be done. Unfortunately, it came to a point where our miracle baby couldn’t fight any longer, and she was making the decision for us. I knew that I didn’t want her to fight alone in her isolette and I am so grateful the staff gave us those final ten hours, with our family surrounding us, to hold and love her as she continued to fight.

She took her last breath on July 23, 2017 at 10:28pm.

As we watched the doctors and nurses remove every tube and wire from our daughter I truly felt my heart break. I honestly don’t remember who I was before all of this.

The hardest thing about losing your baby is never being told why, and to have doctor after doctor classify your loss as a fluke. As those close to me know, I am not someone who dwells. When I want answers, I’ll research and research until I find what I’m looking for. And as there’s no consensus among doctors for when a pregnancy loss goes from being a ‘fluke’ to being a potential pattern that needs investigating, I knew I would need to educate myself on the things I could do to keep this from happening again.

From my research, I believed I had what’s called an incompetent cervix and PPROM. For those that don’t know what that is, it’s where your cervix can shorten or dilate before term, due to the cervix’ insufficient ability to carry the weight of the fetus. This can cause you to go into premature labor, or PPROM (Preterm Premature Rupture of Membranes).

I also learned about Dr. Arthur Haney out of the University of Chicago, one of the foremost experts on incompetent cervix and PPROM. After sending him my entire medical record for his review, including my lab and ultrasound reports that had been stored with LabFinder – a lab and radiology platform that I can’t say enough about, and not just because I’m writing this on the LabFinder blog – he not only confirmed my suspicion about having an incompetent cervix, but also explained the disconnect in medical practice. For women with my condition – women where the cervix change was extremely subtle – the protocol is to diagnose them with an incompetent cervix only after they’d had another second trimester loss, or preterm delivery. I indeed had an incompetent cervix, and without intervention, every pregnancy would end the way this one had. Dr. Haney was able to diagnose me without going through that pain again.

I’d heard over and over that I didn’t cause this and there was nothing I could have done differently. To be honest it went in one ear and out the other and I just wanted to scream at them to lose the empathy and to tell me YOUR BODY FAILED YOU AND YOUR BABY! But when Dr. Haney said it, and finally explained the why, for the first time since I’d lost Charlie, I felt that weight on my shoulders get a little less heavy.

He also said something that knocked the wind right out of me: “Nobody has this that you know. Your friends are having normal pregnancies and experiencing full-term births. Some people you know may have miscarriages but no one has this out of your friends. You just had a devastating loss – and this is a full-on loss.”

He was right. Instead of experiencing one of the greatest moments of my life, every day I replay in my head my entire pregnancy, our birth story, my antepartum stay, and her roller coaster in the NICU. It’s on a continuous loop, and I’m constantly seeing her beautiful face and perfectly formed body. Watching her improve and then digress and then improve again… I will never understand why we didn’t have more time or why this happened to us.

I’m not scared of going back to the NICU. I’m scared of being uninformed and out of the loop on the medical decisions being made. The NICU is a place where miracles do exist, but no matter what, as a new mom, the NICU itself is still traumatic. All of the uncertainties, the obstacles, the pain, the statistics…it all takes a toll. But like me, when in this situation, you’ll find a hidden strength you never knew you had. And you’ll see the strength of your child. You’ll grow amazed and proud of them as you watch them win their battles, and you’ll still be proud of how well they fought even if they lose.

Unfortunately, I walked that slow, heart wrenching walk out of the hospital and away from my sweet tiny baby. I felt pain in my heart, and PJ and I held each other for dear life as that was the only way to keep us moving. Because it’s true what they all say: nothing prepares you for the loss of a child.

I know a part of me will always be missing, and my husband and I will never really be okay. Together we fought so hard for our little girl, and we wouldn’t be okay right now if it weren’t for our family and friends who surrounded us every day with so much love. We hope to raise awareness by sharing our story, and to help others know that they’re not alone. Charlotte taught PJ and me the joy and heartbreak of parenthood, and her small but mighty presence created an unbreakable pillar of strength between us. As parents we planned and envisioned what her life would be like, and although it was much shorter than we hoped, we will forever lean on her memory for inspiration and guidance as we navigate the next chapter of our lives.

Thank you so much for letting me share my story with you. In final note, I just want to stress that all women should insist on getting their cervical length measured to prevent preterm delivery. If the length of my cervix had been checked, rather than just assuming it was within normal limits, maybe they would have noticed it was shortening, and would have caught it early enough to intervene with progesterone and/or cerclage. Remember, once you’re past viability (24 weeks) it becomes a loss not a miscarriage. As it is, they don’t save babies born before 24 weeks.

So talk to your doctor today, and start testing and getting your cervix measured as soon as possible. An incompetent cervix is treatable, and the sooner you talk to your doctor, the earlier you’ll get treated, and the closer you’ll be to watching that precious miracle of yours grow up before your very eyes.

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