Looking to talk to some mums who suffered HELLP syndrome!

Have you suffered from HELLP syndrome or had a pregnancy complicated by an underlying disorder? Discuss your concerns here

Looking to talk to some mums who suffered HELLP syndrome!

Postby brogansmum12 » Mon Jan 14, 2013 10:30 am

Hi My name is Ashleigh Im 21 years old and have a beautiful 5 month old little girl.
I have been suffering badly with PND and PTSD since my daughter was born 11 weeks early becasue of HELLP syndrome! I live in the shetland islands and there is no-one else up here that has suffered the same thing so I have no one to talk to!

I was very ill when she was born but was put to sleep for the emergancy c-section and cant remember anything about being taken in to hospital or for a few days after so latley my mind has been making up what happened and I have suffered awful nightmares heres what happened!

On the 10th august (friday) 2012 I saw my midwife and told her I was experiencing pain around my ribs and up my right side but she told me I was being silly and couldnt possibly be feeling any rib pain at 28 weeks of pregnancy so I didnt bother getting a second opinion when the pain got worse! 4 days later on the tuesday 14th aug I went to bed at night as normal but was in the worst pain imaginable and had been for a few nights so I woke my partner and called the hospital who told me to come in as something wasnt right as soon as I got through the door the midwife on duty told me I looked awful and did a few routine checks (blood pressure and urine) and they were very bad results that came back so I was flown away to glasgow hospital with my parnter at 4am!
once there I was rushed in to ICU and had to have plattlets pumped in to me before I could be operated on as my platlet levels were at 10 when they should read 300! and was told I would have to deliver my baby at 29+3weeks! I dont remember much from then on as I was knocked out for the op and was in ICU for 3 days after not even allowed to meet my tiny 2lb 7oz baby girl which was awful for me! she is doing fine now shes a healthy 10lb baby at 5months and is a cheeky monkey but spending 5 weeks away from home while she was in the special care baby unit was hard I was alone alot as my partner had to fly home to make money! just looking for some people who have been in the same situation to chat too! :D
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Re: Looking to talk to some mums who suffered HELLP syndrome

Postby tree » Mon Jan 14, 2013 10:50 pm

Hi Ashleigh,
Welcome to the forum! I am sorry that you had to find us here, but we are glad to have you. Congrats on your little girl. It is great to hear that she is doing well. Many of us have dealt with PTSD and post-partum depression after traumatic births. This forum helped me through a lot of it. Stop by the main Ask the Experienced forum and introduce yourself if you get the chance. There is a little more traffic over there.
Daughter born April 2009 at 35 weeks due to Class 1 HELLP
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Re: Looking to talk to some mums who suffered HELLP syndrome

Postby gavinsmom » Wed Jan 16, 2013 10:05 am

Hey Ashleigh,
I can tell you things will get better. I had my son 3 weeks early with HELLP syndrome that went undiagnosed because I did not have high blood pressure. I did get to see him briefly after his birth, but it was just a glance and they took him away. I went to ICU and I can remember being so sad because I could not hold by baby. I even cried when they took me to the ct scanner. I was only in the hospital for four days, but it seemed like an eternity. I had never been sick like that before and it was very difficult. I can't even imagine what you went through spending 5 weeks away from your loved ones. It is hard to explain to someone who has never been through the experience. I was very very emotional afterwards and I couldn't even look up HELLP syndrome for about six months. He is two years old now and I am pregnant again. I am so glad that you have a happy healthy baby and I wish the best for you. It will get better day by day and eventually life with become more normal, you will just have a rug-rat to chase around all day ;).
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Re: Looking to talk to some mums who suffered HELLP syndrome

Postby Lee2011 » Wed Jan 16, 2013 12:09 am

**HUGS**

From Surrey! (hope you are warmer than us at the moment!).

It does get better, easier to talk about and somewhat easier to hear stories of "easy labours/pregnancies". If you are interested in finding out what happened during the time you don't remember you can request your medical records from the hospital that treated you. My son was born at 38 weeks, induced due to a late diagnosis of Class 1 HELLP and I remember less than 2 hours of the first 48 of his life and have recently requested my records. Took a month but I have them now - important for me as I am considering a second pregnancy and wanted to be fully armed with knowledge before talking to GP and consultant!

Must dash - *hugs* again!
Mother to baby boy Lee born 12/3/2011 after emergency induction at 38weeks following diagnosis of severe atypical HELLP syndrome. Having come within hours of losing both our lives every smile is a celebration.
Baby sister Paige c-sectioned at 38 weeks with no signs of HELLP :)
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Re: Looking to talk to some mums who suffered HELLP syndrome

Postby yellowroseo » Sun Feb 10, 2013 07:36 pm

I also requested the records of my sons birth and read them to help me know what happened during those first few days. I always tell my self that I just need to be greatful that we are both happy and healthy and that it doesnt matter how he was brought into this world. Saying this is much easier then believing it. As time passes though it gets easier to accept. My son is now 5 and it doesnt bother me any more, instead now I think about the possibility of having another child or choosing not to. I always thought pregnancy was such a care free and fun thing until this happened. Now I make it my personal mission to warn all pregnant people I know to watch for the unexpected. I have to say that the hardest thing for me since having my son was my sister being pregnant. I was irrationally scared that somthing was going to happen to her. I was scared she was going to get hellp syndrome too. Thankfully she had her little girl without any signs of hellp syndrome. Just remember that you are not alone and that there are lots of wonderful people here to talk with that understand.
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Re: Looking to talk to some mums who suffered HELLP syndrome

Postby lkw787 » Fri Aug 16, 2013 05:44 pm

I'm so sorry for what you endured, Ashleigh.

Perhaps looking at photos and hearing from those who were there may help you fill in the gaps of what you missed. I hope that time will ease your pain.

In my case I lost three naturally conceived pregnancies (always after two good u/s with a h/b when the placenta is supposed to start supplying blood to the babies) and then since I was 41, was convinced that "old eggs" were my problem and so that I needed to move on to doing DE IVF (two RE's had told me this but it took me a while to accept it.) I couldn't help but think something else must be causing my losses but all the experts said that DE should solve the problem. However, I did consult an RI who recommended a host of expensive tests so I took his list to my RE and asked him, "What tests, (if any) on this list have merit?" He told me that I should get tested for APA, ANA, and NK Count and when I came up positive for APA with elevated NK Count he told me that these results meant that I should inject lovenox, a blood thinner, daily while pregnant to prevent microclots from forming which, he said can kill a baby. To suppress my NK activity he said I should take low dose prednisone, a steroid, daily during the first trimester. So with my DE IVF achieved pg at age 44 (after two prior attempts to do a DE cycle had to be cancelled prior to retrieval due to problems with the donors' health histories and/or response to stims) I did both. We asked my RE to transfer only ONE embryo (to avoid the chance of twins which due to a fibroid, I had decided would be too high risk for me) and that single embryo "took" and I had a blissful, easy pregnancy until two weeks before my due date when my OB instructed me to cease the lovenox injections I'd put myself on. Two days after ceasing lovenox my liver began to rupture and I had to be rushed to the hospital for an emergency C-section. After the C-section I suffered a stroke (caused by the most severe class of HELLP Syndrome) and I ended up in a month long coma. I needed brain surgery, a tracheotomy and $11,000 in blood transfusions. Ultimately, I spent six months in hospitals and missed out on living with my new DD during that time. Although my husband brought her to visit me in the hospitals I have no memories from these months due to the brain injury. My first memories date from six months after my daughter's birth when I lived in residential rehab and wept each night because I longed to return home. I battled short term memory deficits for a while but thanks to 18 months of cognitive therapy have made such a good recovery that my short term memory has now returned to normal. However, I will probably never get any memories from those first six months back...that is time I completely missed out on spending with my baby, a loss over which I will probably forever grieve.

I would LOVE to talk to other mothers who have suffered HELLP. I tried to start my own in-person support group for HELLP Syndrome survivors that met in my home in Sherman Oaks, CA, but only one other woman showed up and her story differed so greatly from mine that it was as if we suffered completely different illnesses.

Obviously I am not allowed to carry another pregnancy. (Never mind that at 48 I consider myself too old, the risks of getting HELLP again are too high.) Recently, we made the decision to donate the frozen embryos from our DE cycle to medical research, a decision that was difficult for me (I had paid for one more year of storage without telling my husband) but I've finally accepted that the embryos may do someone else some good. I am sorry, of course, that I can't carry again as my pregnancy was one of the happiest times of my life. My daughter and I truly bonded during that time. Though she did not hear my voice until she was three months old (since before that I could not speak) when I did finally speak again I'm told that she clearly knew my voice, turning to find me no matter how far away from me in the hospital room she was, no matter whose arms held her. I had to go through so much to bring her into this world and though we don't share genes our bond is tight.

I look at photos of my DD and me during that time and I read my husband's blog that he created to keep our friends and family informed and I try to focus on what I have NOW with my daughter rather than what I lost because there is nothing else for me to do. I'm very sorry for what you suffered and wish you a happy, healthy future. Good luck to you!

Lisa
dressagequeen42@gmail.com

P.S. I have medical questions for any medical experts out there: could anything have been done to prevent me from coming down with HELLP? and did ceasing lovenox cause HELLP to hit? Did lovenox protect my baby who was born healthy (unlike so many other HELLP Syndrome babies?) Thanks ahead of time.
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Re: Looking to talk to some mums who suffered HELLP syndrome

Postby Nanay11 » Thu Aug 22, 2013 11:11 pm

I haven't been on this for some time. Sorry to hear what you are going through Ashleigh but it does get easier. Always think positive! Always see the good in every situation. It's interesting because last year around at the same date aug 10 I also seen my ob and complained about the pain I had been having by my rib cage she thought it was gallbladder. Unfortunately she was wrong because the very next day I had called in for her because the pain was so unbearable. I checked my bp at home and informed her what it was. Immediately she told me to go into labor n delivery. I was not as fortunate as you are because aug 12 at 24 weeks and a few days I gave birth to my sleeping Angel. HELLP took my baby and almost took me with him. My husband and I had to make the choice of trying to save me for our now 5 year old little boy.

A year has past and not a day went by that I didn't think of my Angel. I miss him each and everyday. I will tell you though that as the year went by it got a bit easier. On the day of his anniversary which we will always celebrate as his birthday I felt this sense of peace. I finally found peace with everything that had happened. I truly believed he helped me heal and find peace within.

I hope you find that peace that your looking for. To find the answer to all the questions you have of what happened during the time you brought your beautiful baby into this world. Those are only a few moments, you have your whole life to watch your baby grow. To love and cherish each and every moment you now have with your baby. You may not remember or know every detail of those moment you missed but from the time you finally remember and able to hold your baby you will forever remember that! Cherish it and never let go. Don't let your imagination get the best of you (my mind goes wild like that too sometimes... I think of the what if or what could have been). Focus on what you have in your arms now a beautiful lil girl who will love you til the end of times. I on the other hand get to only hold my son Angel in my dreams and I've come to terms with it and hope you have too with your situation.
Kai - born 11/24/2008 a healthy 3 1/2 yr old was born two days prior to due date due to Pre em
Angel - 08/12/2012 born 22 1/2 weeks due to sever Pre e and HELLP. Forever remembered an loved.
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Re: Looking to talk to some mums who suffered HELLP syndrome

Postby Becky1981 » Wed Aug 28, 2013 10:36 am

I was going through HELLP on the day that you initially posted this. I too had extremely low platelets, emergency c section, extreme abdominal pain, etc. My baby was in the NICU for 40 days. I have short term memory loss of the month prior and after giving birth. I also think I have PTSD, but haven't gone to confirm it yet. I know what you're going through to a T....feel free to reach out :)

It's nice to know we're not alone.
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