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Julie's PROM Story

By Julie, France
PROM at 18 weeks + 2 days. Delivery at 29 weeks + 3 days.
Story added: 2011-03-13
I promised myself I would write our story on this website if it had a positive outcome. Every day after our PROM, I checked this website, reading through the stories, looking for advice, answers, signs of hope.
I got pregnant in June and found out a few weeks later that I was expecting twins. At 8 weeks, I started bleeding a lot, I went to the ER and they could not see where it was coming from. I kept bleeding, but not as much, every day, red, brown, orange, brown etc... A few days later, I went to the gynecologist who found a subchorial hematoma. He said I should take it easy, not be running the whole day, but I could still go on vacation. I went on vacation, I was laying at least half of the day. One night I started bleeding a lot again and it was very painful. I thought again that I was losing the babies. We went to the ER again first or second day of August, saw the hematoma, same size and we saw the babies were okay, their hearts were beating.
From then on, I kept bleeding a little every day. I went to the gynecologist twice in August. The hematoma had grown (8*6*3 cm). The gynecologist I saw told me that it can just go away most likely, or it could lead to various complications such as PROM but he had seen that only once in his career. Well, ... I was due to become his second one.
End of September, in the morning, my water broke. I was at 18 weeks and 2 days. I went to the ER again. I had suspected that my water broke, but the water was brownish because it was mixed with old blood form the hematoma. At the ER, they did some chemical tests to check if the liquid I was leaking was in fact amniotic fluid, they did a blood test, and a scan. The scan detected that one of the two "pockets" had barely any liquid left. The doctor told me I was going to stay at the hospital for a few days, to check if I was developing an infection. Infections are usually the cause of early PROM. Here it was an irritation of the membranes by the blood from the hematoma that was stuck and which was only partially evacuated through daily bleeding.
When I saw the nurses and doctors over the next several hours and days, I started to understand fully what happened and what the likely consequences were to be. I was told there was very little hope and that most likely I was going to give "birth" in the coming days, or develop an infection and also lose the babies. But that anything could happen. I think they were just trying to be gentle at that point. I got some antibiotics in case the PROM was due to an infection. I also understood that at that point of the pregnancy, what mattered to the doctor was me and not the babies. The situation was risky for me if I was to develop an infection, and the babies at 18 weeks were not viable anyway. After a week, we decided with the doctor that I would go home. There was not any "active intervention" to be undertaken at the hospital. Some doctors strongly recommended bed rest and others said it would not change anything. I put myself on bed rest.
Then, day after day, my pregnancy continued for 11 weeks and 1 day. I had a nurse coming to the house every day the first two weeks, then she would come every 2 or 3 days. The only time I went out was doctor's visits, many times I had to go to ER (7 or 8 times because of new massive bleeding, or contractions every 5 to 10 minutes for over an hour, or strong pain.... I think I had it all),
I kept bleeding until week 23, then it seemed to stop. I was reaching viability stage and it was already looking like a miracle. Doctors started to stress me out, preparing me, telling me that I could have two premature babies and that babies born at 24, 25, 26, 27 weeks, so early, may have to deal with heavy consequences. My main worry was not what could be the consequence of having premature babies, but what could be the consequence for one little girl who had been growing with nearly no water at all. Lungs are developing a lot between 18 and 26 weeks and with so little water, there could be no functioning lungs. The amount of water in her "sac" was always below 2 AFI. This was very bad. So I undertsood (after looking for information on websites that pulmonary hypoplasia, skeleton deformation were the main consequences of the lack of amniotic fluid). The websites I went on were the scientific ones such as pubmed or elsevier. Keywords I searched for were "early prom". It seemed that all odds were against us.

The membrane that ruptured was for the twin that was the one above (twin 2). As a way to reassure me, my doctor told me that maybe twin 1 would physically protect twin 2 against infections as germs would have to climb higher.

Also, the chief Doctor told me that he was not expecting this twin to have skeleton deformities even though it grew with no water, because the other twin was right next to her and moving, and with a full sac of amniotic fluid, thus creating space and possibility of movement for the twin that had no water.

Each day was a battle, a nightmare, but my husband, my family and my friends were all helping, praying and supporting me. I could have never imagined how much people were touched by this and how much each of my close friends did everything, taking days off leaving their husbands and kids behind to come and spend 3-4 days at my home, to cook, clean, take my older son to daycare. It was unbelievable, and I feel I owe them and owe it to life.

All along the pregnancy, I felt lost, I felt we were touching the limit of science (1) Prom is so rare, 2) so early, 3) on twins, 4) on twin 2, it is usually on the lowest twin, 5) prom because of an hematoma...), but also the limit of ethics (termination of pregnancy may make sense with one baby, but with two? and at least one healthy one...?). My doctor never clearly spoke to me about termination. I was very upset over that, because I think this is a discussion that SHOULD have taken place. I knew what my decision would have been, I wanted the pregnancy to continue, I had difficulties having kids, and I did not want to terminate the pregnancy, but this should have been addressed. My doctor was competent but he was not good at communicating, which in such situations is extremely important. The nurse that came to my house was wonderful, taking it one day at a time, leaving the house every day, saying: "today, everything is ok". She would take my temperature, listen to the babies' heartbeat (hearing them on the Doppler helped a lot) and check for signs of infection or new developments. I think she also ended up being my psychiatrist. I think she will never forget this experience either.

At 26 weeks, I started bleeding again. From then, I had to go to the ER regularly, I had more and more contractions, pain, bleeding etc.. At 27,5 weeks, I was hospitalized for 10 days again, because I had several worrying signs. I had a scan that seemed to show that twin 2 had stopped growing. For me, that was the end, I just could not deal with all of this. I felt I was going into the wall no matter what. During this whole pregnancy, I never knew if I was going to have 0, 1 or 2 children with 2 healthy babies (a miracle inside a miracle), 1 healthy and 1 unhealthy or 2 unhealthy. It was a total nightmare. I have never been in better shape than during that pregnancy, I lost 15 pounds!!

The night before I was released from the hospital, one of the nurses told me I should drink more water (because I felt I was not losing amniotic fluid anymore, which I had been doing the past few weeks). In the morning after, I was completely wet and I told her you are right, it really worked, I will be drinking 3 or 4 liters of water every day.

I went home in the morning.. and went back that same night at 2am because of contractions. Actually, the water was coming from the Twin 1 this time. I had ruptured the other pocket, and likely also due to the irritation from the hematoma.

Our two girls were born at 29 weeks and 3 days in the morning. I freaked out when I understood I was giving birth, but in a way it was also such a relief for me, I felt we were finally going to start being able to deal with the potential problems and do something about it.

At birth which happened naturally, both babies were breathing (I had gotten cortisone shots to induce lung development at 24 and 28 weeks). Neither twin required to be intubated. Twin 2 was smaller than Twin 1, but not by much. They were 1,030 and 1,160 grams, measuring 39 cm each. To us and the doctors, it was a miracle.

Babies needed caffeine, CPAP, a little oxygen for a few days, but they were doing fine.
I developed an infection (this infection which I was hearing about all along!), but three days after giving birth, and probably due to whatever was left of the old hematoma.

The babies did not get the infection, the placenta was not infected. The babies stayed at the hospital (first neonatology and then development unit) for 2 months, and now they have been home for one month. They finally look like newborns, but already they are both starting to smile.

The neonatology unit was a difficult experience, but for parents who experience PROM, it is to be expected. Other parents do not expect early delivery at all and are suddenly thrown there. We felt we were so lucky our children made it that far.

Still, they will have to be followed long term, for 6 or 7 years. We have been told that kids who are that premature have lower IQ by 5, are less tall by 5 cm. But at this point I just want them to be healthy and happy.

I could write so many more details about this whole story, but the main advice is to share the information, KEEP the HOPE, get several medical opinions and get some help from your close friends and family, mostly moral and spiritual support. Do not hesitate either to see a psychologist who knows about this condition, about premature babies and so on, some of them are specialized in difficult pregnancies, they are the ones who can fully understand and help.

We feel extremely blessed and we believe this is a miracle. In a way, I think we are still in shock.
I really hope our story will give hope to those who are experiencing similar situations.
I know this website and the stories definitely helped us. I felt I got more important answers and advice here than through discussions with any doctors, and I am very thankful.
I wish you the best.