"No Warning Signs at All": A HELLP syndrome patient story
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- เผยแพร่เมื่อ 25 ม.ค. 2021
- HELLP syndrome survivor and infant loss mom Alexandra de Leon shares her preeclampsia story for the 2021 Society for Maternal-Fetal Medicine President's Platform on preeclampsia.
I had hellp syndrome. 16 years ago and my baby survived fortunately. But the birth trauma was unbelievable and I suffered the most horrendous post natal depression with psychosis. I really needed additional support following such a traumatic experience. Thank you for sharing this
I always enter the words “hellp syndrome while pregnant “ in the search engine to see if anything pops up. And there you have it, your video popped up in the results. Thank you so much for sharing this! I too had my liver enzymes show up okay and it wasn’t until 36 weeks that everything started looking bad and the dots were connected that I had hellp syndrome. I hope you are doing well. Do not let this break you. I’m so glad you’re able to talk and share this. I get scared realizing how close I actually was to dying and losing our daughter.
Thank you for sharing your story. Last July I gave birth to my son at 37 weeks, he was strong and healthy. As for me, I developed HELLP syndrome and ended up on a ventilator, the drs didn’t think I would make it. After 4 weeks I’m ICU I was able to come home to my baby boy. But the birth trauma is so real.
I hope your recovering! Birth trauma takes a while to heal from for sure! You are not alone ❤
I'm so sorry for your loss! I was diagnosed with HELLP syndrome last September when I was 36 weeks. I almost didn't go to the hospital because my blood pressure was under 140/90 and I thought my stomach was hurting from eating a heavier meal before going to bed. They first thought I had gastritis and were about to send me home with some medication when my blood levels came back and they were horrible. I had to have an emergency c-section and it was a very traumatic experience. But thank god my daughter and I both survived. She is now a thriving 5-month-old. ❤
Same condition was mine . I also diagnosed with hellp syndrome and eclampsia..I delivered my baby on 20th July 2022 .. my baby girl (5month) is absolutely fine and active too.. but my condition is not good after delivery.. I m suffering by knee pain, my legs and thighs hurt too much everytime.. I think my thighs and legs muscles are getting weak day by day after I diagnosed.. my legs are getting slim and feeling like my muscles are damaged... Sister please tell me Do u also suffering the same..? Reply me asap..
Sorry about the bad English my English is not good..
Please check with your doctor first ..
Omg it is exactly what happened to me in September 2022. Now my kid is 20 months old and we are both ok but this is so hard to accept. I really would like to have another baby but what if hellp hits me again?
I'm sorry for the late reply, I didn't see your comment@@chandnisaifi847
I didn't experience that but I hope you talked to a doctor and they helped you! All the best to you.
@@FlorianaValentiI'm so sorry that happened to you too! My husband and I are trying to conceive our 2nd baby now and I'm also worried. My doctors have told me to take Thrombo ASS as soon as I have a positive pregnancy test. That is supposed to lower the chances of it happening again. I wish you all the best!
Thank you for sharing your story! I’ve been through similar with my last baby, it was very traumatic. My doctor never caught my symptoms and never diagnosed me!! I Had the preeclampsia followed by placenta abruption at 34 weeks- ended up in emergency C-section that saved my baby’s life and my own
I'm so sorry you went through this! In 2005 i had the same diagnosis! I had a regular doc appt a few days before. My BP was a little on the high side but not over the 140 mark. .. and at that appt I remember not being able to urinate and they said they'd get it at the end of my appt, but sadly it was overlooked.
This was my first pregnancy. On the following Sunday, i went to the ER and they called me doc, he was a close family friend. My step dad is a pediatrician. ..... so i went because i wasn't feeling my son move for an extended amount of time. I was 23 weeks and just getting used to his constant flutter.
So even at the hospital i couldn't urinate and they were about to overlook it until my doc came in and said if i couldn't urinate then they needed to cath me ... my protein was so high it set a record for the highest they had ever seen at our county hospital! They transferred me to the next county women's and children's hospital. .... for over a week i wasn't allowed light, TV, or anything stimulating. ... i remember feeling fine on the ambulance ride but the time i got in my room, after that was a huge blur!
So now i had made it to Jan 18th 2005, it was a Tuesday..... my 22nd birthday and the same day of the week i was born on. They had checked my labs (i had been getting steroid shots every 72 hours in attempts to help my sons lungs and development ) they got labs right after leaving for the night and came back in telling my parents on my birthday, they had no choice but to deliver in hopes to save my life. I can remember not having my vision. I couldn't see any color much less any dimensional vision.
At 8:34pm my son was born at 1 pound and 7 ounces. He was 24 weeks and 5 days!
He just recently (January 2021) turned 16 and got his driver's license. Valentine's day 2005 was the first i held him skin to skin for kangaroo care, mothers day was the day brought him home! His first birthday he was still in 0 to 3 month clothing. But he's incredibly smart and has no long term issues. He does have regular typical vision impairments, he has had issues with asthma, but all of those are issues that are strong hereditary issues on my side anyways.
I went on to having 2 more girls, one in 2009 and the other in 2014. They were both over 36 weeks but i did have pre-eclampsia with both. My youngest in 2014 was 6 pounds and 7 ounces even at 36 weeks....
In my last pregnancy, my special high risk OBs did do lab work that diagnosed me with MTHFR gene mutation. .... i also was diagnosed at age 14 of polycystic ovarian syndrome PCOS. .... but that gene mutation , from my research, seems to cause a crazy amount of issues. Especially when added to existing conditions.
I was put on on daily shots and all sorts of other health supplements!
My son just turned 16 and got his driver's license. He's tested higher than most kids in his grade and is also in private school! .... the only issue at this age he has is asthma and contacts for his vision! But my vision is also 20/ 625 without lenses....
I just hope this can give hope and reassurance to anyone going thru this! I stayed at the Ronald McDonald house for about 4.5 months! From January 2005 to May 2005.... the hardest but most memorable time of my life!
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Wow! Thanks for sharing your story ❤
Thank you for sharing your story . Your story gives me hope for another good pregnancy. I didn’t have Help but definitely had precclampisa it was traumatic experience for me to know that my bp was too high and had to give birth early so sorry for your loss .
Hey sweetheart, high blood pressure 210/90 for 3 days of labor with my son who was 30 weeks. PreEclampsia & toxemia(he was poisoning me through blood & my body was poisoning him as if he were a foreign object) came in those last 3 days. No warning signs at all. No HELP SYNDROME for me but my son was jaundice. Spencer was HUGE 8 lbs 3 oz but undeveloped lungs and heart because I was diabetic and they told me hypoglycemic. My condition had me in seizures until his heart stopped completely. My doctor had also arrived on day 3 from Germany. Once the baby’s heart stopped they took him C-section.
God Bless you, and your Angel. My son and I made it. Today, he’s 19. I often wonder why we had such a hard delivery. My daughter came 5 years later and I was monitored and she was taken before I could go into labor.
Thank you for sharing your story!! Just last year, I went through pretty much the exact same thing you did. I was 24 weeks pregnant at the time, and I had a normal first trimester. Once I hit my second trimester...everything went down hill. I had major pain in my abdomen, and my blood pressure was so high that the doctors said that If left untreated I could have had a stroke. They had not= choice but to deliver my baby who passed away inside me, shortly before being delivered.
The doctors did say that I can still have another child, but will need to be monitored frequently, and be on blood thinners, and some other medications. I will most likely have to deliver early as well. Your story has given me hope that having another baby is possible, so thank you for sharing :).
Thank you for sharing your story this gives me so much hope I too loss my daughter at 25weeks due to HELLP and DIC as well and that my biggest question will I ever be able to care a child with these dx I’m supposed to go to be seen by specialist hopefully within the next few weeks praying for good news
having the same problem and got my baby emergency delivered at 28weeks 5 days last 3 weeks, my baby is still in NICU. This is my first pregnancy and still can’t get over the traumatic events. And now postpartum phase hit me hard cause i recovered by myself without baby by my side.
I just went through this and loss my baby girl at 21 weeks.... i know this sounds crazy but i really would like to try again what did you and your doctor do differently when you got pregnant again
wow it is interesting and am sorry for your loss gaby am also i lost my twin by hellp syndrom so please what you take after that and at what time gap you were try the next pregnancy because am scared but i need ababy.
hi mama! i’m so sorry for your loss!
i’m jessica i had my daughter when i was 27. she had to come 5 weeks early via c section
i had a very healthy pregnancy up until week 34. my bp got up to 176/90. i was told i was on the verge of having a stroke. was diagnosed with preeclampsia then they told me it was HELLP. it was terrifying. baby girl was healthy but small. 4 pounds but she was strong!
i on the other hand went into kidney and liver failure. developed a uti from my catheter then developed sepsis. it was a journey. finally one month later we both went home.
i was told of i ever got pregnant again it would most likely happen again so i take every precaution not to get pregnant. it’s very traumatizing and i honestly don’t like talking about it but i like seeing i’m not alone in it.
god bless you and your family. ♥️
Hello sis, same condition was mine I had preeclampsia, hypertension, low plete let, thyroid and hellp syndrome.. I was diagnosed well and my daughter delivered normal at 36th week of my pregnancy.. she's fine but my condition is not good after child birth . My both legs muscles are getting weaken day by day my legs, knees and thighs hurts so much and getting slim.. I feel weak and I am unable to do any leg excercise due to pain.. please tell me if you are also feeling the same .. I just want to know that is it happening because of magnesium injection therepy which I was given during delivery time to control my bp..
PSA: 140/90 is NOT a "normal" high in any sense in pregnancy (or otherwise) unless you typically run around that when not pregnant. If taken 2x and still that level, it needs to be addressed.
I would also add that my last blood pressure taken at the doctor before i went to the hospital and discovered HELLP syndrome was 125/?, when normally it’s approximately 105/72. I mentioned to the medical assistant that that was the highest my blood pressure had ever been in my life and she brushed it off. For my individual case, this should have been looked into. A growth scan several days later showed my son to be much smaller than he should be and my blood pressure was through the roof. Then the low platelets were discovered and liver enzymes. I had vomited bile the two days prior and it hurt to breathe deeply, in the upper part of my stomach. This was HELLP. Luckily we both survived.
@@NC_NYC That sucks so much, I am glad you were both okay. It is so important to listen to the patient, and for every person to know their own normal as much as possible. Generally speaking, no one knows their own body as well as the patient and concerns are almost always worth exploring.
I survived blood pressure of 210/90 for 3 straight days during my pregnancy….was in seizures but we both made it. So, there are different levels of HIGH BLOOD PRESSURE
Hi Mam , thank you for sharing..we also have the same story we lost our baby boy around 27 weeks.. We have the similar symptoms.. Now we are worrying if this will repeat again but your story gives us lot of hope.. Could you Please tell us are you faced any issues for your next pregency? It will help us to move further steps..
Hi Praveen!
I am so sorry for your loss.
I want to tell you that I did not develop preeclampsia with my second pregnancy. I was monitored closely with appointments every 2 weeks after I hit the 20 week mark. I was taking a baby aspirin daily.
I did develop preeclampsia during my third pregnancy but it was when I was 39 weeks and it was caught at an appointment and my OB sent me right upstairs to deliver. After an experience like this, you learn to listen to your body and to advocate for yourself, it becomes second nature. If you feel something is wrong, they will take you more serious. Good luck! ❤️
Hi Praveen, i had pre eclampsia from 24 weeks baby delicered at 28 weeks, she died. This was years ago. But i had two pregnancies after ....i was prescribed the one à day low dose aspirin. It makes all the différence. I was foll8wed closely j'y the obstetrician. Each time baby born at term normal weight. Some words of hope. The obstetrician asked me" why do people like me go into obstetrics?" Then he answered his own question: " to help women like you."
Hello, i am very happy that you have two beautiful kids after that scary experience you had but did you develop the HELLP Syndrome again with you two kids or it didn’t happen again to you ? I went through this but my Doc here in UK didn’t know was it was! I had seizure, heart palpitations, upper abdomenal pain nd difficulty breathing. I survived by my God 🙏🏼🙏🏼... After 8 years I am still worried to have another kids, I dnt wanna go through that again 😢... what’s your advice?
Hi Amal, so sorry for all that you've been through. Alex did have near-term preeclampsia in her other pregnancies, but not the very challenging early-onset HELLP syndrome that she experienced with her first pregnancy that required her to deliver Gabby so early. There are some protocols that can help, so we recommend chatting with your Ob and possibly seeing a specialist (here in the US we call the "maternal-fetal medicine subspecialists," but in the UK it's often an additionally credentialed high-risk Ob.) Aspirin therapy has been shown to be of assistance to help prevent or delay preeclampsia in some women, and they can also do a workup to figure out if you have any underlying issues, like a blood clotting disorder, autoimmune condition, or other contributing factor. Most of all, we just wish you peace as you make this decision - our Foundation understands better than anyone what a fraught decision it is to try again after HELLP! Sending you lots of hugs and good vibes as you pursue this journey. Don't forget to check out the resource on www.preeclampsia.org - we have a lot of good articles about trying again, what tests your doctors may run, and other patient stories like Alex.
My doctor put me on a baby aspirin daily at 18 weeks after research showed that it could prevent preeclampsia. I know that’s a big no no but I trusted her as she keeps up to date with recent changes in medicine and I had my baby boy no problems at all thank you GOD!
@@ruizlynn22 so asprin can minimize the risk please tell me i was suffered 3times and i lost my 3babies and now am worry about the future.
@@ellenihagos1944 when I research online this is what pops up: “Aspirin inhibits thromboxane, a hormone that raises blood pressure and is known to be elevated in women with preeclampsia. Aspirin improves blood flow across the placenta, by dilating uterine arteries. Inadequate placental blood supply is thought to play a key role in initiating preeclampsia.”
Looks like it helps vasodilate the blood vessels to help prevent vasoconstriction. That’s why they tell you with a heart attack take aspirin to open the arteries. The more open they are the more blood can flow easily
@@ruizlynn22 Thanks dear
Thank you for sharing. My story is similar only I didn't have abdominal pain, I had a severe debilitating headache with non stop vomiting. I also had breathing issues and low platelets but I wasn't diagnosed with HELLP. They put in my chart 'gestational hypertension.' I had high BP the last few weeks of my pregnancy and the doctor kept saying all was fine, I wasn't given a BP machine or protein strips or any medication.
In the USA do they not use the very low dose one a day aspirin protocol during subsequent pregnancies if mom had previous eclampsia? It is used in Europe.
It is becoming more common practice here in the US, but it's only been in the last 3 years that it has become so. Prior to that, some high-risk doctors may have done so, but not all Obs.
@@PreeclampsiaFoundation That' s surprising. But good that is starting now. Maybe mom' s need to know about it to ask about it? I had a disastrous pre- eclamsia pregnancy with traumatic emergency cearsarian and pre- term baby who eventually died. Since then I have had two babies both born at term, both normal weight. I had the one a day very low dose aspirin treatment both times. .
@@ruthtaylor1083 how did you recover from that experience?
@@gabrielaprieto9112 Having two healthy childten born after that experience means i didn' t just stay in that disastrous place of a pre- eclampsia pregnancy. But when.my daughter eventually died.....i am still getting over it , or maybe one never does. Its more learning to live with it. Another couple I knew at the time with a similar loss ended up divorcing. I researched and discovered that there is a high rate of parent dying within 2 years of loss of a child. My husband died 2 years after the loss of our daughter.
@@ruthtaylor1083 Ruth, I'm so sorry for your loss. We have lost our baby because of Hellp syndrome. It has been a nightmare. It's hard to keep going. I almost died but our baby couldn't make it.
Weird… my name is Gabby and my birthday is May 19th.
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