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A HELLP Story
by Donna
sub - 1/31/02



 

Donna's Story

My pregnancy with Brian had been completely uneventful until Christmas, 2001. While I'd had
the typical morning sickness in the first trimester, after about 16 weeks, everything had gone well. Because of a severe genetic condition in the family, we had wanted genetic counseling and testing performed, and when, at 19 weeks, the results came back that we weren't at risk for inheritable genetic conditions, we were on top of the world. 

The Level II US showed that we were expecting a healthy baby boy, due at the end of April. We began decorating the nursery with castles-both of us are fantasy fans, and we've collected dragons for years. I was very
excited when I found a crib quilt on Ebay with a friendly dragon, carrying teddy bears over a castle. There isn't much in baby stores with a castle theme, but we also found a little green stuffed dragon rattle, which we bought together for the baby to come.

Over Christmas, we went to visit my husband's family in Florida. His mother had saved a large number of the toys and clothes from her children, and his sister and her husband, who are expecting a baby in February, went through and sorted them out with us. It was really exciting to think of sharing these with our little boy in a few years, and we picked out and packed up 5
boxes to have shipped back to TN. 

Christmas day, we drove down to his sister's house for
Christmas dinner, and I really wasn't feeling well. I attributed my nausea to the van ride. That night, I fought abdominal pain and cramping, but assumed it was a result of dinner. For the rest of that week, I dealt with pains I assumed to be pregnancy related, and tried to relax and enjoy the time with family, and the shopping for the baby. 

It hurts to realize that at that time I was already sick-and that at that point, it was already (according to my perinatologist) too late to save the pregnancy.

December 29, we flew back to Memphis. I wasn't feeling well when I went to bed, even with the Phenergan my OB had prescribed for motion sickness, just in case. 

Within a few hours, my entire abdomen felt like it was on fire. I tried to change positions, to sleep, and couldn't. At 2:00 I woke my husband up. I was in severe pain, and my head hurt so much that I literally couldn't see straight. We called the dial-a-nurse service my insurance company had, and she told us to go to the Women's hospital. I remember wondering why the women's hospital, since I wasn't in labor and wasn't having the baby yet.

When we got to the hospital, we were directed to labor and delivery. I had barely gotten in the door and given them the requisite urine sample when the nurse looked at it, at me, and had me in the bed hooked up to monitors. I have never before seen such fast action in an ER setting. 

My blood pressure was extremely high, and so were the protein levels in the urine. The nurse made the response to a question from my husband that I "Wouldn't be leaving for awhile, maybe not until this baby was born". 

At that point, I was ready to stay there, in triage, for the next four months if that was what it took. The medication they'd started in the IV had actually relieved the pain, and I felt relaxed for the first time in days. It didn't last.

I was rather surprised when the Perinatologist who had done the testing and US came in to talk to us when the test resuts came back, rather than an OB-I think this was when I realized that something must be severely wrong. His words were "I hate to have to say this. You have a
condition called HELLP syndrome. We don't know why it happens, but basically your body is breaking down in response to the pregnancy. Unfortunately, the only thing that will stop it is delivering the baby." I didn't understand at first that he meant we needed to deliver the baby then. I just assumed that I'd be feeling awful until the baby came. 

My husband realized it first, and asked if there was anything else we could do. The doctor said there wasn't. Not only would it risk my life to try to wait much at all, but because my blood levels were so low, the baby
would also be affected. 

If it had been a few weeks later, there would have been a chance of saving the baby, and they would see if there was any possibility that the baby was advanced enough to do so, but if the baby was indeed 22 weeks, there was little they could do. My OB, called to ask for a second opinion, agreed-we were going to lose the baby, unless a miracle occurred.

They moved me into Labor and Delivery, with more wires and monitors than could be imagined
outside a science fiction story. I don't think I'd really quite understood what was happening yet-I don't know if it was the fact that I was sick, the medications, or just that I didn't want to.

The Peri explained that he would be having the anesteisologist start an epidural, because he didn't want me to go through an early induction, without preparation, with too much pain. There would still be some pain during labor, because if the epidural was too strong, I would be unable to deliver, but I should tell them if it hurt too much, because he didn't want that stress on me,
and I couldn't take the stress of excess pain with my blood pressure so high. They would be trying to lower my blood pressure some before inducing, but would need to induce that day. 

An ultrasound showed that the baby was indeed, 22 weeks of gestation, at most 23. Too early to try
to hold off to mature the lungs. 

Starting that evening, and for the next day, different methods were tried to induce labor. In all cases, labor started, but didn't progress. The cervix wouldn't dilate. After the second induction, the fetal monitor was disconnected, which was a relief. It was really hard to be able to see that the baby still was alive-and to know that if labor worked, he wouldn't be alive anymore. 

By Monday night, the doctor warned us that if I had not delivered by the next morning, we would have to go to a C-section, because my blood levels were dropping and the blood pressure was rising. 

Tuesday morning, there was some optimism. While my blood levels were still low, they hadn't dropped over night. Because of this he wanted to try one final induction technique-filling the uterus with a blood-level saline solution, in the hopes that the extra stretching and pressure would work with the progesterone and oxytocin to induce delivery. They had also inserted a cervical catheter, to insert the solution and to try to stretch physically. 

Tuesday was the hardest labor I'd yet faced. The only thing good about it was that, by labor being so prolonged,
my parents and brother who had been driving the whole day before from Virginia were able to arrive before Brian was born. The doctor really wanted to avoid a C-section, because of the long healing time, and because a C-section done so early in pregnancy would require any future pregnancies be delivered by C-section as well, since more of the uterine wall would have to be
damaged in this delivery. By that point, I didn't really care-I just wanted this whole thing to be
over. 

After three days on the IV magnesium, I was having all the symptoms-no reflexes, hot flashes, cotton mouth, unable to eat or drink anything. I couldn't move at all. The monitors were constantly beeping, and if I even tried to talk, the blood pressure and pulse rate would soar off
the charts. And the epidural wasn't working well at all-it hurt, far too much.

That afternoon, the final induction was judged a failure. It would have to be a C-section. I was concerned about the epidural-I had been in severe pain all day, and now they were telling me that they could get it to a level to do surgery? As it turned out, I was right. After almost three
days on the epidural, it was no longer blocking pain sufficently to be effective at the higher levels. We had to go to general anesthetic. I still regret this, because it means that while my husband and family got to see Brian during his short life, I wasn't aware enough to have any
memories until later.

When Brian was born, he still had a heartbeat, and was warm. Other than that, there were no signs of life. He lived his short time in the arms of family, of those who loved him. We have some precious pictures of him, which I treasure, and a few small memories. The hospital handled it well, in trying to give us as much as possible to hold on to, and giving us the time with Brian.

When I woke up, my first coherent words were "Where's Baby", and they brought him to me in
recovery. I still can't believe how perfect he was, even at 22 weeks. I had been expecting something out of a biology book. Instead I got something more like a newborn kitten. Tiny, fragile, incomplete, but obviously a little human being. The little hands and feet were especially precious, with tiny fingers and fingernails. Yet the contrast to a full-term newborn was amazing.
Too tiny, too fragle, too obviously weak to live. And if my body hadn't given out-if it had done it's job, he would have had the time he obviously needed.

My grandmother had been a very creative person, and while I was growing up, she had made many doll clothes. I asked my mother to bring over the box of doll clothes I had saved. Obviously, the baby outfits wouldn't fit Brian, but I was hoping I would find something which
would, so that we would have something special to at least bury him in. Everything was too big.

The hospital had a small stock of clothes made by volunteers for the littlest preemies, and they had dressed him in a white gown, which we had to settle for, along with his recieving blanket.

We also sent the little dragon with him. After spending more time with Brian the next day, we sent him to the funeral home.

The next day following delivery, my body started to recover. The liver enzymes dropped almost immediately, and the blood levels started to creep up slowly. The blood pressure dropped suddenly and dramatically-where the alarms had previously been going off because it was too high, now it was too low. 

Wednesday night, the Magnesium sulfate and some of the other IV
meds were allowed to run out. I could actually drink again!

Thursday the epidural was disconnected, and I was able to be moved from Labor and Delivery
to antepartum. Until then, I hadn't realized how swollen and bloated I was-I literally barely fit
into the wheelchair! My hands and feet were so swollen that I looked like one of my cabbage
patch dolls. When, Thursday night, I was able to move, with help to the bathroom for the first
time, it wasn't the pain of the C-section that was the problem, but the huge amount of weight I
was carrying, and the lack of responsiveness in my legs. I think the grief really started hitting
Thursday-I was starting to feel better physically, but emotionally I would lose it at any moment.
It wasn't until I was out of L&D that I realized how much of a relief it was not to have signs and
sounds of babies around me.

By Friday, things seemed to be improving, and there was hope that I would even make it home
sometime over the weekend. Unfortunately, Friday my blood pressure started rising again.
Saturday we started blood pressure medications, without any effect. Sunday I woke up with a
horrendous migraine headache, which lasted, even with medications, for about 12 hours. By
Monday, the medication level seemed to be right, and the blood pressure was dropping.
Tuesday, the perinatologist removed the staples from over the incision, and allowed me to go
home, with blood pressure monitoring, about 5 medications, and a follow-up appointment on
Friday. Emotionally, the strain continued. Because of the pain of the C-section, I couldn't do
any more than quietly cry-I couldn't yell, scream, throw things, or really let the emotions out. In
addition, while I needed the extra help which my mother and mother-in-law were able to provide,
and appreciated the visits from friends both in the hospital and at home, I've never been good at
showing emotions around others, so there was an additional strain there.

That first few days home, before the funeral, was the hardest. Much of the funeral planning had
been put off until I was home from the hospital, so I could participate. We still had to select the
gravesite and marker, and plan for the funeral with the minister. Nothing seemed right. Not for
the child we'd planned and expected. Not for that fragile, tiny little boy who would be dwarfed
even in the smallest casket the funeral home had-the boy who was hardly bigger than the little
dragon who now guards him.

There is something very wrong in planning a funeral for a child who isn't even to his due date
yet. In some ways, one of the most comforting things was going to the cemetery in the "Garden
of Angels" and seeing the number of stones with only one date-each of which was a loved and
wanted child, who never got to live. Brian is not with me, but at least he is not alone. He is with
other children, and is beside and near other little boys. Yet the funeral, though small, was
exactly what was needed. While the grief isn't over and done, at least Brian was remembered
appropriately. The Thursday after I came home from the hospital, my husband brought home a
large, soft version of the dragon who is with Brian, and that stuffed dragon has been with me
most of the time since-including at the funeral. 

So far, long-term results for me look good. Liver and kidney function appear to be unaffected.
Blood pressure is still controlled with medication, and we have been able to drop one of the
medications entirely. Blood levels aren't back to normal yet, but are recovering. Emotionally, I'm
hurting over the baby that I didn't get to bring home-the baby who wasn't even supposed to be
here yet. I know it will continue to hurt for some time to come. 

Donna Metler 1/20/02

Donna DeVore Metler
Music Integration/Orff Specialist
Mother to Angel Brian Anthony, 01/01/02 (22 weeks, severe PE/HELLP syndrome)

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Updated 
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