Hope for the Waiting Game: One mom's story of PPROM
When I was 17 weeks pregnant with my fifth baby, my water broke. I figured I had accidentally wet my pants and wrote it off as a common pregnancy problem. A few days later, I went to a routine OB/GYN appointment but we didn’t do an ultrasound. I did want to find out the baby’s gender so that same afternoon I went for an entertainment ultrasound. Even though she was not supposed to give me medical advice, the technician did let me know I had almost no fluid surrounding the baby and to call my OB immediately. That was a Friday, so I had to wait until after the weekend to get in with my doctor.
The next Monday I had an ultrasound, and my doctor just kept saying there was nothing we could do. We had genetic tests done that I had turned down in the beginning of the pregnancy and was just told to wait. All the tests came back negative for any problems with the baby, and my doctor gave me a referral to Maternal Fetal Medicine (MFM) at the University of North Carolina, near where I lived at the time. I went online and on Facebook and found support groups for Preterm Premature Rupture of the Membranes (PPROM) so I could be armed with knowledge and options by the time I went to my referral appointment.
I was 20 weeks when I had my appointment with MFM and genetic counseling. They did a level 2 ultrasound, and we found out that the baby had working kidneys and even had fluid in his bladder during the ultrasound. I did, however, have zero measurable fluid again. The doctor came in to talk to me and offered termination. I immediately told him that was not an option for me and asked what the next option was. I was then told to come back for an appointment at 24 weeks and, if the fluid level hadn’t changed, I would be admitted to the hospital for the remainder of my pregnancy.
I didn’t quite make that appointment. At 23 weeks, I began bleeding, was admitted to the hospital and given steroids for Baby’s lung development and magnesium sulfate for protection against brain bleeds in case he was born in the next couple of weeks. I spent 10 weeks in the hospital before he decided to make his appearance. He arrived via c-section because he was footling breech after I went into natural labor. He spent 96 days in the NICU and today is 21 months old with chronic lung disease that presents as slight asthma.
Going through this experience and talking with many other women who have too has opened my eyes to how little hope seems to be offered. I was surprised that the medical professionals offered me no hop and that the only option was to terminate the pregnancy. But I have now have a beautiful son. As a result, I have joined a group called Little Heartbeats that sends out PPROM packs around the world to let people know they have other options and to help give them information for making decisions when it comes to PPROM. It includes a journal and a pen, a coloring book and colored pencils and a pencil sharpener. I currently am raising funds so we can become an official 501c nonprofit here in the United States; the organization’s founder in the United Kingdom is doing the same over there. We love what we do, and if we can bring even one mother hope for her baby, then it will all be worth it.
PPROM is the cause for 40 percent of premature births, so more awareness of this pregnancy complication is essential. Anyone whose water breaks before 37 weeks has PPROM, but most women never hear that term from their doctors. Also, in the United States, physicians don’t have a set protocol on how to deal with PPROM. I want to help change this, helping more doctors come to a better understanding of this complication, supporting clearer training on what to do and say when patients face this situation.
Around the area, I am speaking to women’s groups and setting up booths at community events to bring more awareness. I tell everyone I meet our story and encourage women that, if they or someone they know experiences PPROM, there is hope. Do the research and seek out PPROM groups for support and resources. Sometimes, the only ones who can understand are the ones who have been through this before.
As a matter of fact, a Kansas City PPROM mother shared with me about great support she received at a local hospital. Her baby was born at 21 weeks, 6 days gestation, and they both had amazing care at Saint Luke’s on the Plaza. You never know the knowledge and encouragement you may receive as you share with other moms.
Julia Cairl and her family currently live at Fort Leavenworth, where her husband is stationed with the Army.