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discussing including a positive triple test (for downs). I also got sick 6 days prior to the discovery that Zok was gone. We thought I had food poisoning. She had been gone for only a day or two. We would like to learn as much as we can to help us cope with our loss and to prepare us for future pregnancies.
From Rick and Delinda
We lost our first grandchild to HELLP and would like to contribute to this organization that so helped our daughter thru the whole ordeal. We would like to contribute in the name of our first granddaughter and for whatever the greatest need is. Thanks!
From Shelly
(Kelseyville, CA) I found your website while looking for information about HELLP. My beautiful sister-in-law passed away from this August 12th, 2004. Her precious baby survived and is doing well. Our family is trying to learn more about this since we had never heard of it. We live in Lake County, California (northern). I would like to see if there is a chapter up here. Thank you.
From Tracy
This is a short note to tell you what I have been through in the past year. My story started in October last year. I was five months pregnant. We were expecting a baby boy, Samuel Andrew, after his grandfathers. I started the morning with severe pains in the upper gastric area. This did not feel baby-related so I went to the E.R. where they diagnosed me with a urinary tract infection, gave me antibiotics and sent me home. By evening I was in SO much pain I could not stand it. My mother called my OB and he had me meet him at the hospital. After blood tests he said there was a problem and I was shipped by ambulance to St.Louis to see my high risk doctor due to my high blood pressure. I was told that my liver was swelling to the point of irreversible damage if I did not deliver my son. We were told that he had no chance of surviving; he was too small. He was born that night by c-section and weighed 4.5 oz. and 7 inches long. He lived for five minutes. My entire family got to hold him and say good-bye. Two days later just when I thought things might be getting better, I developed lupus anticoagulant phosphalipid syndrome. A mouthful, HUH ? I was in danger again. This time for blood clots developing. I was put on blood thinners and will be on these now for the rest of my life. When pathology on the baby's placenta came back it was full of blood clots. He was not going to survive even if I had not gotten HELLP Syndrome. Actually, my son saved my life. I have since had circulation problems and had to have two of my toes amputated. My blood thinners have been regulated and we are contemplating trying to conceive again. We now know what to look for. My Dr. is hoping for a better outcome this time. I would really like to hear from anyone with my problems. Please e-mail. Sometimes I feel I am alone with this problem.
Thanks, waiting to hear from anyone.
From Claudia
(Bolivia) I had HELLP on the 25. of August and just escaped death but my child died after 8 minutes of life in the arms of my husband. We now go through pain and guilt as our doctor here in Bolivia did not inform us and when I called with extreme upper stomach pain the night before he said I should take antigastritic things (he knew that I was at risk of preclampsia). It's a tragedy as my husband has a news agency here and owed a journalist 670 dollars, she ensued him for much more and the judge made an order that he was not allowed to travel outside the country - we wanted to travel to my home country Germany to get better medical support. We informed the judge but he did not raise his illegal arrest. So my little son had to die and I can never forgive me for not informing myself better before. We want to have children but next time be better informed and do everything necessary and every exam possible to not endanger my life and that of my child. As well I would after some time help families in similar conditions, being a psychologist and not wanting that other families go through hell as we are doing. Could you please send me further information? Thank you very much.
From Michelle
(London, England) Two years ago, January 1999, I was 22 years old and my partner and I found out that we were expecting a baby. Although we were a bit shell shocked at first, we grew used to the idea and were really looking forward to the birth of our first child. Our baby was to be due on 22nd September 1999. I had a perfectly healthy pregnancy, no blood pressure no swelling, nothing, my scan at 16 weeks showed that the baby was fine. I began to relax and I even bought a few things for the baby (clothes), by then everybody knew that I was expecting. I had a scan at 20 weeks and according to the sonographer the baby was doing well. The following week I noticed that my belly didn't look as big as it used to. I mentioned this to my midwife who felt my tummy and said that it was a bit too small for my dates. She looked at my notes from the last scan and concluded that the scan would have picked something up if there was anything wrong. By Friday night of that week, I began to vomit, have diarrhea, and pass water all at the same time, my body began to shake as if I was cold, and I had the most terrible pain I had ever felt. The pain was in my back and just under my right ribcage. I was rushed to the hospital where they heard the baby's heartbeat and concluded that the baby was fine and that I was simply suffering from heartburn. They gave me some antacids and sent me home. During that weekend I could not eat, but I consumed pint after pint of water, continuous cups of lemon tea and several bottles of Lucozade. By Sunday I realized that for the whole weekend since Friday night, I had not been to the toilet at all. I went to a different local hospital, they checked the baby's heartbeat and the baby was still holding on, although I did realize the heartbeat was a lot slower than usual and my blood pressure was through the roof. They said that I was just dehydrated and put me on a drip, I asked them for a jug of water, as I was so thirsty, they gave it to me. The nurses took some blood samples as a precaution (thank God they did), when they took a sample however, the blood just started pouring out of my arm like water and it wouldn't stop. About 10 seconds after that where they had pricked me with the needle, blood began to gather under my skin producing a soft lump. They realized then that my blood was not clotting. Soon after that the nurses walked into my room, removed the drip and took away the jug of water. We asked them what was going on and they told me that I had the whole of the hematologists working overtime and conferring with doctors abroad. Twenty minutes after that a team of obstetrics and hematologists filled my room telling me that I was in a life and death threatening situation and that in order to save my life they would have to abort my unborn child. As you can imagine, my partner and I were stunned, and I refused them permission to abort the pregnancy. The obstetric doctor said that she would try everything in her power to save the baby, but that they would have to save my life first. I was initially scared and in total denial, telling them that I felt fine. They were telling me that I was dying, that I had complete kidney failure, liver damage, jaundice, and blood was unable to clot thus starving the baby of oxygen, hence why the baby was so small. They could not deal with me at that hospital, as my case was so serious and so rare. Instead, they transferred me to London teaching hospital at 4 am that morning. Monday morning 7am a whole team of doctors surrounded my bed and I had to explain my whole story again and again and again.... They again began to explain how serious this was and that their main priority was saving my life first and that they would deal with the welfare of the baby after. They said that it was important that I receive treatment a.s.a.p. After extensive blood tests, at 10 pm I was given frozen plasma transfusions. The next day my partner and I asked the doctors to scan me to see how the baby was. Finally they agreed, and they wheeled my bed down to the scan room, I refused to look at the screen, I just stared up at the ceiling silently. My partner however sat in front of the screen excitedly as this was his first time seeing our baby. I told him not to look, but he did. The sonographer scanned my tummy, called another person in and then she said "I'm sorry, I can't find a heartbeat." I knew what that meant and my heart was broken in two. Matt asked me what was wrong and told the sonographer that the heart was beating yesterday so I asked Matt if he understood what the woman had just said... He looked at me in disbelief and said "what?".... I then told him... "the baby is dead.",\ Matt then looked at the screen and said "look the heart is beating, look." The sonographer turned the screen to us and at that moment Matt and I burst into big loud sobs filling the whole of the ward, holding each other and just screaming no no no! We cried and we cried and we cried. The pain that was felt was so intense that I just wanted to die right there in that room. The next day they wheeled me down to the labour ward and induced me. With every contraction I felt closer to losing the life I so much wanted inside of me. The labour pain was excruciating, but nothing compared to the internal pain I had in my heart. After six hours I gave birth to a little girl, my daughter, who weighed less than a pound. As soon as I gave birth to her Matt and I burst into tears just holding each other. The Chaplain came and said a prayer for us and prayed for the baby, Matthew named her Jada. They asked me if I wanted to see her, but I refused, I don't know why, but at that time, I just felt unable to face it. They took her away, wrapped in a white shawl and placed her in a Moses basket. Matt went to look at her and just cried. Still during all this I was fighting for my life, I was put on a dialysis machine and had plasma exchange for six hours each day for two weeks. The following week the hospital allowed me to go out for the funeral of our daughter Jada. She was in a small white wooden coffin with a gold plaque bearing her name. We bought lots and lots of white lilies to place on her coffin in the hearse. She was buried in the baby cemetery. Eventually much to the doctor's amazement I made a full recovery and was allowed back home. Four months later I found out I was expecting again. I was happy but very scared, my doctor wanted me to abort the baby as he thought it was too soon and that I was going to suffer HELLP/Hus syndrome again. However I prayed and believed that this time God would see me through and I had a wonderful obstetric whom I saw every two weeks. I did all my bloods and urine and the occasional 24hour urine sample. I had scans every month, and in the beginning of my pregnancy I was put on low dose aspirin and high dose of vitamin c. I went through the pregnancy without a hitch and at 36 weeks I gave birth to a healthy, beautiful baby girl named Kiara Rebekkah Micha Two days ago she celebrated her fourth birthday! In loving Memory of Jada Louise, She will always remain in my heart and in my thoughts.
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