By Amanda, Denver, CO USA
PROM at 17 weeksDelivery at 33 weeks + 3 days.
Story added: 2017-10-18

Around 16 weeks I received a slightly high AFP test result, but was told not to necessarily worry. It could've been the spotting that I was having that day of the test. At 19 weeks we had an anatomy scan and noticed that there was very very little amniotic fluid. I hadn't noticed an incident prior to that that could've been a rupture, so they thought it was either a slow leak or I was dehydrated. After this I started to notice a tiny bit of leaking when I'd get out of bed in the morning and realized I had been feeling that for probably a couple weeks but thought it was just normal discharge. I had my midwife test the fluid once because I started to notice little gushes more frequently now (just more aware). The test came back negative as amniotic fluid. At 22 weeks we had another anatomy scan and there was still very low, almost immeasurable fluid. We were stunned to learn that this was a very dire situation. Our doctor was incredible, though, explaining that we had already come quite a way if we were still pregnant at this point so we could probably stay pregnant for even longer. There was no evidence of an infection, and they even located the point of rupture to be pretty high up on the sac so it was far from the birth canal (a potential entry point for bacteria). They told us to start bed rest at home immediately, and plan to check in at the hospital for bed rest 2 days prior to viability (24 weeks) and wait it out there. They said he would be amazing if we could get to 28 weeks, because the risks associated with prematurity were so much lower than at 24 weeks. Since the fluid had been low for quite some time, we were warned that the lungs might have not developed at this critical time, but there was no way to know until the baby was born. However all other organs looked good and baby was growing. At 23 weeks, 5 days, I arrived at the hospital and immediately started a course of prophylactic antibiotics, just in case an infection had started, as well as a round of steroids. At 27 weeks I noticed bleeding and was determined to have a placental abruption. Constant monitoring at the hospital indicated that the baby was still fine, but I'd be on even closer watch. I also received a second round of steroids in case labor was imminent. As we got closer to 34 weeks we started to realize just how far we'd come. We still knew there was a 10% chance his lungs would be too underdeveloped to survive, but were anxious to find out and move on from the anxiety. At 33 weeks 3 days labor started naturally, and after 10 hours was successfully delivered vaginally. At first glance doctor's didn't think anything was wrong, but very quickly the situation escalated and my son had to be sedated, intubated, and put on a high-frequency oscillator. The hospital used a blend of NO and O2, and after 2 days he was on a traditional ventilator and the "life or death question" had been answered. He did have pulmonary hypoplasia, but we soon learned that it would not be a death sentence. He just needed more assistance with breathing so he could grow and get stronger. Within a week of being born he was only on high-flow oxygen, but stayed here for another 5 weeks as he really needed the pressure to help him breathe. Once he was on low-flow oxygen he came home, and continued on oxygen for 2 months at home. Around that time he also had the stamina to breastfeed (instead of take a bottle), and ever since then has been developing and growing like any other baby (adjusted for prematurity he is still on the later end of development but not too bad). There were some concerns about a club foot and torticolis while in the NICU, but neither were major. The feet worked themselves out, and the torticollis may have had an impact on some asymmetrical gross and fine motor development, but we are working with therapists on it now. There was some concern that he could've had a brain bleed but we had an MRI done (at 18 months old) and his brain is perfect. My son has had physical therapy since the day he was born, and now also has occupational therapy for fine motor and speech therapy for some speech delays relating to low muscle tone. It is unclear how much of his development is related to prematurity or genetics (his dad and uncle also had gross motor delays and speech issues as young children!) but we are fortunate to have so much guidance with his development. The state-sponsored early intervention program is for anyone with delays, so we are taking advantage of it while we can to stay on top of his physical development. He is a very healthy, intelligent, loving, 20 month old boy as I write this, and without the scrutiny of therapists would have no idea that any of his development is slightly delayed or abnormal, and many parents of term babies would probably not notice.