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From Fiona
fionafulton@iprimus.com.au (Australia)
My first son was born at 39 weeks gestation three years ago due to HELLP syndrome. His progress subsequently was complication-free, although his speech was delayed and continues to be. (His speech when present has been echolalic.) Recently he has been diagnosed with ASD (Autistic Spectrum Disorder). I immediately thought that this developmental disorder must have been due to HELLP as many children with ASD experience birth trauma of one sort or another.
Other medical authorities, however, have suggested that it may be the other way around - that the HELLP etc. is the result, not cause, of this biological/genetic condition. As I also experienced hemolysis at the birth, I have wondered if anoxia (oxygen deprivation) had caused some brain damage. My pediatrician, however, says that anoxia causes cerebral palsy, not autism.
I am still wondering what is the prevalence of genetic complications in children born due to HELLP, and if HELLP is linked to these complications. Has anyone else encountered this combination of HELLP with a subsequent diagnosis of autism in their child?
From Maria Kidner
kidner@tctwest.net who was one of the speakers at our HELLP 2000 Symposium will have her article about HELLP syndrome published in the January issue of the Journal of Obstetrics, Gynecology, and Neonatal Nursing (J0GNN).
From Julie
juliermc@yahoo.com who has been our NC rep for several years has just moved to Columbia, SC. Please keep Julie in your thoughts and prayers, and she was diagnosed with breast cancer this year and has completed chemotherapy and is in radiation. Our new NC rep is Terri tandrews@armc.com.
If you live in Rhode Island, look for an article about HELLP in LIFEStyles in the Sunday magazine written by Laura Meade Kirk.
From Shannon
alyssamarie1us@yahoo.com (New Lenox, IL) My husband and I are trying to have another baby and I would like to consult with a high-risk doctor. Does anyone have a recommendation?
From Ross
RTLightsey@aol.com We just went through this horrific ordeal with HELLP. My wife (Tracy) almost died. It took just about a week for her to pull out of her comatose state. She had me on my hands and knees praying to God to not take her. Nevertheless, she finally pulled through. Many doctors have not seen this bad of a case in a very long time. Bottom line, she went down right after the babies came, and took an excruciating week for her to come back. Babies (twins!) are fine though, and doing quite well. Also, my wife is doing 95% better than she was. However, she still has a hard time with her loss of eyesight (partial central blindness). They are all home now and doing awesome. An ophthalmologist is now on our field of doctors seeing her on a regular basis. Have you heard of anyone suffering from edema in the eyes, after HELLP?? Thank you so much for editing a very informative web page.
From Mindy
melmin@aol.com (Naperville, Illinois) I have some good news. The local ABC channel 7 station here in Chicago aired a story in the Healthbeat segment on premature birth featuring my daughter Megan. The focus on the story was stress and premature labor, however they did mention and define HELLP Syndrome. It aired on the 10: 00 news on September 17, 2003. Here is a link to the story. http://abclocal.go.com/wls/health/091603_hs_pregnancies.html title: Pregnancies at Risk by Sylvia Perez. Also, our family is the Chicagoland Ambassador Family for the March of Dimes Walk America the 2004 year! We are really hoping to get a lot of publicity out about HELLP Syndrome. Thanks for all you do!
From Lori
L4mykids66@hotmail.com I have some questions for you. I had HELLP syndrome in 6/1994 and delivered a healthy son. I was not so good. But now I have liver enzyme results that continue to be 48. They found "fatty deposits" on my liver and tell me it might be from the HELLP. I now have to go to a specialist for the elevated enzymes that have been 48,36, and now 48 again in the last 3 months. Would HELLP Syndrome cause some kind of permanent damage to my liver that would cause these enzymes to constantly be high? Please let me know.
From Wendy
pereira@shuswap.net I have a six year old daughter delivered 6 weeks early due to HELLP syndrome and after her birth my health returned to normal. I have now just been diagnosed with primary hypertension despite not having any of the risk criteria to get this. My doctor is suggesting that the only reason could be the stress caused to my system during the last 10 days of my pregnancy may have somehow predisposed my kidneys or adrenal glands to be now be causing the high blood pressure. Have you heard of any instances of this from any of your members?
I'm really stunned by this diagnosis as according to everything I have read about hypertension I do not have any of the risk factors for contracting it.
From Pauline
leslp@bigpond.com (Australia) I had HELLP in 1996 with my first and only child. I was wondering if anyone else had complications regarding their heart. My resting heart rate now varies between 45 and 32. Prior to Mitchell's birth it was always around 70. My cardiologist is now talking about putting in a pace maker due to what he calls Sick Sinus Syndrome.
From Georgia
Jwsprost@aol.com I have had three deliveries. My first and worse delivery was October, 1990. I delivered my daughter, she was healthy and weighed 5 lb. 2 oz. 3 weeks early. At delivery my blood pressure was 280/140. I was instantly dosed with Morphine due to the immense pain, and to lower my blood pressure. I had to be transported to another hospital and was admitted into ICU. My liver was already swollen and bleeding. I had two blood transfusions and three bags of fresh plasma with in 48 hours. I also had pressure pants on in order to keep my liver from exploding. My family was told that I could be in ICU for 3 to 4 weeks. I was out of ICU and in a room for 2 days and went home. For the next weak I experienced lightheadedness and my depth perception was way off. I could hardly walk straight. By the end of the first week I was back in the hospital with multiple pulmonary emboli (Blood Clots in the lungs). I ended up staying for 3 weeks. The doctors had no idea why I got the clots. After my third child I was diagnosed with Factor V. Leiden. My daughter was also diagnosed with Factor V Leiden. After 4 months I was still trying to get my body back into working order. I had to have a kidney biopsy because my kidneys where still spilling protein. After many months of steroids the protein finally was under control. I was diagnosed with scleroses of the kidneys. My second child was born in April 1993 and was a fairly good pregnancy and delivery. The doctors, 5 of them, had suggested that I terminate that pregnancy. I told them that I would be fine and so will the baby. Well, I was fine up to the very end. Then HELLP kicked in, my second daughter was born 4 days late and weighed in at 7 lb. 10 oz. perfectly healthy. I stayed for 5 days after that delivery, went home and with in a week, was back in the hospital with a PE, stayed 2 weeks. My third child was born July 1997. My son was delivered 4 weeks early. He weighed 5 lb. 3 oz. The doctor induced me because my platelets where very low. And did not want to risk loosing either one of us. It took only 5 days for me to recover from the effects of HELLP. And yes, I did get another blood clot in my lungs. Stayed for only 3 more days. He was in NICU for 11 days. He was not eating or digesting for the first 10 days of his life. The doctor told me that my son would follow the preemie line on the growth chart. Well, not my son. By eight months he was bigger then most 10 month olds. He is 6 years old now. He has been diagnosed with Wolf Parkinson White Syndrome (WPW).I wonder if being born early has anything to do with him getting WPW. I would like to know if anyone else has had all three Toxemia, HELLP, and Factor V. Leiden. Good luck to all of you who have had to or are now dealing with any one of these problems.
From Sharel
soconnell@nttc.edu (Washington, PA) has recently formed a chapter of the Preeclampsia Foundation. Members of the HSS attended the initial meeting which, was held November 8.
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