I lost my beautiful daughter 9/3/12

[judib43]

My daughter was diagnosed with HELLP in her 8th month of pregnancy. We knew there were issues but the doctors didn't diagnose her correctly right away. After being induced early because of breathing issues and a platelet count of only 6,000 (it should be over 100,000) she gave birth to my beautiful, perfect Grandson Matthew 31 days early, on 8/30/12. She only got to spend 4 days with him. She was having continued problems breathing as well as extremely low platelet count and high blood pressure. They just continued her on oxygen and more platelets. The doctors and nurses said she was getting better and would be home in a few days. The following morning I got a call to get to the hospital asap. When I arrived they were doing chest compressions which continued for an hour and 15 minutes before they "called it" and pronounced her dead at 11:00 am. It was absolutely heart wrenching to watch 15 people in the room working on her and I couldn't do a thing about it. I am doing all I can to raise awareness but can't help thinking that this should have been diagnosed sooner, thus saving her life. A friend of mine is a doctor and when he heard what was wrong before she passed away he knew exactly what it was. Has anyone else had a similar experience with either a misdiagnosis or a diagnosis that came too late?

[angieb]

I am so incredibly sorry for your loss. What a beautiful family.

HELLP can be really tricky, and get really ugly very fast. My own case was "atypical"- I was only 23 weeks, my blood pressure was normal, I didn't spill protein. But our daughter was severely growth restricted and I kept having horrible upper right quadrant pain-- for a few weeks even. I went to my doctor for the pain and it was dismissed as normal pregnancy stuff. (And with my blood pressure being normal and my urine clear, I think that most doctors would have thought that.) A week later the pain was so bad we went to the hospital, when I first arrived they did bloodwork, and everything was almost normal, my liver enzymes were just slightly elevated. Luckily, they kept me, trying to figure out what was wrong, and 6 hours later they redid my bloodwork, in that time my liver enzymes more than doubled and my platelets dropped by more than 100,000..in 6 hours. We were forced to deliver our baby at only 23 weeks and she didn't survive, while I continued to get worse for the next day and a half until things slowly started improving. I narrowly missed getting a blood transfusion for low platelets. But even as my labs got worse, my blood pressure stayed okay and I didn't really even feel worse. They consider my case atypical. But HELLP is rare enough that I think a lot of cases end up being atypical.

[holly3372@msn.com]

I am so sorry for your loss. May you find love and support from those around you at this time. Thank you for sharing this beautiful picture.

[blythe]

I'm so very sorry for your loss. Your daughter looks so happy with her baby, my heart breaks that she won't be able to raise him.

PE and HELLP can be so tricky - many, many women have symptoms and warning signs and stay safely pregnant for weeks or more, while some women get horribly ill within days or even hours. The doctors have to walk a tightrope between keeping mom pregnant so baby gets the benefits of being "inside" as long as possible, while at the same time watching mom closely so they can induce labor and deliver before mom gets too sick. Sadly, women can continue to get sick after delivery, even though delivery technically starts the healing process. I'm so sorry your daughter died. I hate this scary, awful disease.

We are very available here on the forum to grieve with you and share what we understand of this disease. The foundation also has a patient support network if you'd like to talk to someone on the phone. Please feel free to email me - heather dot curtis at preeclampsia dot org, or use the private messaging or email here on the forum.

Again, I am so sorry.

[kerisue]

I am so sorry about the loss of your beautiful daughter and that she and her sweet son won't get to know each other. It's tragic and unfair. This disease has touched far too many lives (it took my daughter too) and I'm sorry it touched yours in the worst possible way.

[eleni]

Echoing all the other sentiments! We hold you in our thoughts and prayers and are so so sorry for your loss. Nothing can be more tragic or senseless or frustrating. Perhaps it is comforting to know that you are not alone and that others have met the same tragic conclusion to HELLP syndrome or to preeclampsia; perhaps it is less comforting to know that science and medicine have not gotten us (yet!) to the point where we can anticipate these outcomes and then have a treatment in place to do something about it. Either way, know that the Preeclampsia Foundation stands beside you in your grief (we have all been to bad places because of this horrible disease) and in asking the questions and demanding the answers that you seek. Much of our research, provider education and advocacy work is focused on improving outcomes, today and in years to come. We MUST have better diagnostics, better predictors and better options for treatment.

Please call us anytime if you want to talk to somebody and also know that they women (and men!) on this forum are there for you, every step of the way.

Warmest wishes,

[bsherricca]

i am so so sorry for your loss .....my pregnancy was badly handled as well in that while i did not develop HELP (as far as i know) the doc did not diagnose me as having PE until it was very severe ..despite repeated visits because of excessive vomiting, elevated pressures and +1 protien ....i lucked out in a sense .....i found this site realised what my symptoms cld be and insisted i be hospitalised irrespective of his insistence that it was uti ...'i survived my son didnt .... i know there is nothing i can say that will ease your pain but i know what you are going through and you will find the women here sturdy shoulders to lean on and very resourceful in helping to answer the what ifs and more importantly women who have also been transformed one way or another by this dreaded disease

[brianned5]

I am so very sorry for your loss!!! I almost died from class I HELLP syndrome and severe early onset preeclampsia. My preeclampsia, which went undiagnosed for about a month, caused my HELLP syndrome. My platelets were also right around 6000, my liver enzymes were 2938, normal range is 40-90 I believe. My liver shut down. My kidneys also shut down. My blood pressure was 228/165, The doctors are still surprised I survived. Unfortunately we were forced to deliver our daughter at 25 weeks. She died 10 days later. It's been 4 years and I still have no answers, no explanation for why so many doctors are so ignorant to preeclampsia and hellp. I found so much support through this foundation during the days after my daughter's death, and through my subsequent pregnancy. Nothing can take away the pain of my loss but just having support, knowing I'm not alone has helped me cope.

[tmetz]

I am sorry for your loss. I know your pain all too well, I lost my 20 year old daughter to Severe HELLP on 8/29/09, 47 days after her emergency c-section. My granddaughter was about a month early weighing just a couple ounces over 5lbs. I am raising my granddaughter. If you ever need to talk my email address is tmetz371@gmail.com
My daughter was misdiagnosed and was treated for a blood disease they said she had (which she didn't have). I too walked in Icu while they were trying to save my daughter.



Natasha Ann Metz
4/3/89 to 8/29/09
Severe HELLP

[mychaelelaine]

So so so sorry for your loss!!!