By Becky, Wisconsin USAI feel compelled to share my PROM story because only a year ago, I bookmarked this site while on bedrest and passed my time by reading others' stories. Reading about good outcomes gave me and my family hope, as I wish to do for whomever reads this.
PROM at 21 weeks + 2 days. Delivery at 31 weeks + 4 days.
Story added: 2002-11-20
I had complications following the delivery of our firstborn and was told that my uterus would likely never support another pregnancy. There was little to no endometrium left and lots of scar tissue where a fertilized egg could not successfully implant or grow. And for 10 years that was the case.
Then amazingly I became pregnant; and stayed pregnant. We were cautiously optimistic. Then at 20 weeks I began cramping and bleeding on and off. A Level 2 ultrasound revealed no probable cause, but two days later, in the 21st week, my water broke. I spent four days on hospitalized bedrest, basically preparing to go into labor and lose the baby. I continued to make fluid and leak it. My AFI was as low as 1cm.
The only thing left to do was go home and continue to lie flat in hopes of preserving the pregnancy. We knew the odds were stacked against us, and even if time went by, the baby's lungs could be compromised, stuck back at 21 weeks development. The situation was grim.
I had bathroom privileges, and even then, on the advice of the home health nurse, my husband wheeled me in a wheelchair to and from to keep as much pressure off the bag of waters as possible. I drank water like it was the very air I breathed. And we prayed. A lot. We didn't know if our actions would contribute to a longer pregnancy but we felt like we were doing something, anything in what proved to be a very powerless and uncontrollable situation.
Every week my husband loaded me up in the car for my weekly ultrasound to determine the baby's growth and fluid index. Once we reached the 24th week, we knew there were measures that could be taken to help our baby in an NICU. There was a plan in place if labor was to begin as I would need to be transferred out of state to be near a neonatal intensive care unit. It felt like a whole new ball game, although we worried about the effects of little to no fluid on our baby's development.
During the 26th week I noticed that I wasn’t leaking fluid for one day, and then another. Much to everyone's surprise, I had a normal amniotic fluid index at the next ultrasound (I think it was 12 cm). The ultrasound appeared normal. But the baby seemed to be growing so slowly (probably because we were watching so closely from week to week). We wanted the baby to be at least two pounds before he was born, if possible, but we learned later that gestational age, rather than size, is a better predictor of how the baby might do in an NICU after birth. Naturally we were holding out for more weeks under our belt, too, but every day was a cliffhanger, thinking labor might happen at any moment.
Later that week I began to cramp and bleed again. I was put on IV terbutaline and monitored in the hospital, but things quieted down and I was sent home. Labor started up again within 24 hours and I was put on oral terbutaline at home, which bought me two more days, uncomfortable though they were. Then my water broke again. I went to my local hospital and was given the first of two doses of betamethasone (a steroid to speed the baby's lung tissue development) and IV magnesium sulfate to inhibit labor. I was transferred by ambulance to a perinatal facility about 2 hours away, where I was placed on a high risk unit to wait for the next betamethasone shot. Within 48 hours they were ready to take the mag sulfate off, because with ruptured membranes they do not want to mask infection with drugs and because it is believed best to let nature take its course.
However, nature was not ready. We waited, literally on the edge of our seats, for labor to begin, but it did not. We expected a baby would come that day. It was almost anticlimactic, except that we knew it was best for the baby to remain in utero. I was moved to a hospitalized bedrest unit elsewhere in the hospital. I ended up staying for 5 more incredible weeks. It was unbelievable that it went on that long. We were so lucky.
Separation from my family was a most difficult situation, but we regarded it as one big family adventure and did our best to adjust. If we had any idea how long it might be, passing the time would have been a bit more bearable and I might have found more productive things to do. But thinking the baby could come at any minute, it was difficult to concentrate on anything for any length of time with so many variables up in the air. In addition to the uncertain future of our baby, we were concerned about how the delivery would go. Due to my past complications, I was at risk for hemorrhage. A surgical delivery was planned in order to control bleeding if it should occur.
At week 31 I awoke to a feeling that something just wasn't quite right which quickly gave way to active labor. The baby was breech, as many pretermers are, having not turned yet, and he was determined to come out before the surgical team was ready. He was footling breech so the C-section was unavoidable, much to my relief because I was still in a panic about postpartum complications. Thankfully, there were none. Our beautiful boy was 3 lbs. 2 oz. and 14 ΒΌ inches long.
He gave a weak cry. Despite the betamethasone, he had respiratory distress syndrome, or RDS, (formerly known as Hyaline Membrane Disease) which means the alveoli don't have the elasticity they need to facilitate breathing in and out due to the immaturity of the lungs. (It is not a permanent condition.) He was given artificial surfactant through a ventilator and placed an incubator. Within 48 hours he was off of the vent and we were able to hold him. He had a high bilirubin count and received phototherapy for 14 days. He did receive a low dose of oxygen through a nasal canula for a few days afterward as he was having trouble breathing easily on his back (he had strider from the intubation and was retracting a bit). He began feedings of breastmilk by the fourth day and steadily progressed with only one temporary setback. Within two weeks he was moved to a step-down unit and by the end of the third week he was moved to a level 2 nursery back home so we could see him every day. He spent two weeks there as a “feeder and grower” and came home at 36 weeks gestation, 4 lbs. 8 oz.
The only issue relative to his lack of amniotic fluid that we are aware of, other than the RDS, was contractures of the arms and legs. This is basically stiffness and minimized range of motion due to being “stuck” in one place. His left leg was dramatically curved inward and upward and his left ankle was curved in enough that the neonatalogist considered the possibility of a clubfoot. (The right ankle was turned in slightly, too.) However, it was pliant and flexible so they addressed it as a “positional deformity.” An occupational therapist established range of motion exercises for all extremities and placed splints on both feet.
By the time he reached his due date he was doing his own range of motion exercises in the crib! He had also outgrown his splints and his feet were doing fine. At one year he is cruising furniture and standing briefly, doing all the things a 12-month old should do.
He had ear tubes placed at 6 months, but that was likely hereditary more than anything. He also had bilateral inguinal hernia surgery at 2 months, but this is common in boy babies born full term, and a likely result of his having hydroceles (sacks of fluid that follow the testicles as they descend). Hydroceles often resolve themselves, but in his case, loops of bowel slipped through the opening, resulting in hernias. The surgery went without a hitch.
Our PROM experience was frightening. A tiny life hung in the balance and there was so little anyone could do. We know how lucky we are that the pregnancy held out for so long, allowing the baby to grow and develop in the best incubator yet – the womb. And lucky, too, that despite his prematurity he seems to have caught up and suffered no adverse effects.
We hope knowing that we made it will help others hang on (to the bedpost, their sanity, their hopes) for as long as possible.
Tummy pats to all (but not too hard because we don’t want to start any contractions!)