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My sister is in intensive care, I need your info/tips,please

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

My sister is in intensive care, I need your info/tips,please

Postby HerBrother » Fri Jan 25, 2013 07:38 pm

by HerBrother (2 Posts), Fri Jan 25, 2013 07:38 pm

This will probably contain typos and be quite a messy post. I apologize.

Hi you brave moms,

My sister (20) is currently in intensive care. She is connected to breathing machines and a lot of other machines too.

I will try to lay this out for you as clearly as possible:

She has been suffering for the last 3 days but expert doctor said it's probably nothing. Today my mother noticed yellow in her eyes, called me to see if she was imagining and I saw it. This was 3:30PM. She almost did not eat for the 2 days and have been suffering pains, and throwed up too. Please, I am not looking for future advice or condolences, I need a better picture of where our chances stand. I know this is not official advisory forum but any piece of info can be useful.

Anyway, husband took her to hospital after I researched on it. It was around 5:30 pm.

I think they got her in c-surgey at 19:45 or 20:45.

21:30 they come out of the room, the baby, weight 2.7 kilos is on life support. They tell us she is going to be okay.

20 minutes later they tell us she is on life support, and that serious damage has been done to the liver and kidneys.

An hour later one of the doctors came out, said that she is "no longer in life danger, but still on life support, and we don't know what will happen with kidneys and liver, things haven't worsened though".

It is now 3:32 AM, I'm at the hospital, and because I will not trust a doctor again in my life, I need information. Dad and mom are divorced and she is their favorite child. Rightly so. Pure angel. So kind. I need to be as analytical and as strategical as possible on the next few days, I'm not looking for re-assurance, just an action plan of what I should in case this or that unfolds.

My sister has a small body, suffers anemia. Had a hard time conceiving. First pregnency. Baby no longer on life support but is being watched.

Any one know what is the mortality rate of mothers that got to the LIFE SUPPORT section?
What are the chances of severe long term complications given she is on life support?
What we should look for in the next few days?
What questions should I ask doctors
Given that she is no longer in life danger, what are the changes she will have really severe issues like veggie state, blindness or incapability?
How fast or slow should her body progress.


Give me anything. Whether good or bad. I need tonnage expectations and actions for me and the family.
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Re: My sister is in intensive care, I need your info/tips,pl

Postby tree » Fri Jan 25, 2013 08:55 pm

by tree (819 Posts), Fri Jan 25, 2013 08:55 pm

I am really sorry to hear about your sister. HELLP Is horrible, and we will be thinking of her and your family.

I am not a doctor or medical professional, so be careful with this advice. You should get some better input from the medical staff at the hospital.

I wish that I had good statistics to give you on HELLP survival statistics for women who end up in the ICU. We have several posters who have recovered well after ICU stays. I hope that one of them will chime in. There is always a very real possibility that an ICU patient will not recover, but a recent Spanish study found that HELLP patients had a higher survival rate than other ICU patients with similar blood disorders. Most women start to improve 24-48 hours after delivery. Her doctors may be focused on providing supportive care until her body starts to improve on its own. It will take longer than average for someone as sick as your sister to recover. I would take the statement that "things aren't getting worse" as good news.

Your sister is lucky to have you as an advocate. She needs someone to communicate with the doctors while she cannot. I understand your mistrust of doctors after everything she has been through recently, but you need one that your family has some confidence in right now. Do you have any faith in the doctor managing her care now? If not, find one you can work with and communicate with. This is critical. Ask any question that comes to your mind. Write your questions down so that you can remember things that you thought of when the doctor wasn't around. These kinds of stressful situations make people forgetful and distracted, so you can't count on your brain to remember things like it normally would. Ask about any test results. If you are a quantitative person, ask for her values and the normal ranges, then ask what her results mean. Write them down and keep notes. Ask the doctors and nurses if you see a change in your sister that concerns you or gives you hope. You know your sister much better than they do, so you may notice a change in swelling or appearance that they wouldn't notice. Try to be there when the doctors round and talk to them each time. Try to leave the nurses alone a shift change (they usually need some privacy to discuss multiple patients), and introduce yourself to each new nurse when you get a chance. Ask them questions when you don't understand the doctors' answers. They may be more (or less) clear. I hope this is helpful and that you get more helpful replies soon. Please keep us posted on your sister and the baby.
Daughter born April 2009 at 35 weeks due to Class 1 HELLP
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Re: My sister is in intensive care, I need your info/tips,pl

Postby saffron » Fri Jan 25, 2013 09:55 pm

by saffron (8 Posts), Fri Jan 25, 2013 09:55 pm

Hi,

I had HELLP syndrome with my second child - and was in the ICU for 6 days. I started out with eclampsia (seizures), which was then diagnosed as HELLP. I also developed pneumonia and acute respiratory distress syndrome (ARDS), as well as sepsis. The HELLP syndrome began improving after 2 days or so. I received one pint of blood to help with my platelet levels. The ARDS developed at about this point - and that took quite a toll on my lungs. My liver and kidneys continued to improve. After about 6 days the ARDS also began to improve - and I was moved out of the ICU. Two days later I went home. It's a long, slow recovery process - and there is not much that can be done to make the body heal faster. I'm glad to here that her baby is doing well - keep encouraging your sister - even if she's not awake or conscious. Let her know about the condition of the infant. I awoke to my husband repeating the mantra that my son was ok and that I was in the hospital. The encouragement helped me get through it. This was 6 years ago - and my son and I are both healthy now. There is hope.

I hope for the best for your sister and her child. This is not an easy time. Be there for her. Advocate for her. Get the answers that you need - and continue to look to us and others for support. Please keep us posted.

Jenn Carney
Jennifer
Aidan, born 4/5/02 on time and without complication
Donovan, born 10/6/06 at 31+ weeks, due to HELLP syndrome and eclampsia
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Re: My sister is in intensive care, I need your info/tips,pl

Postby jsu_work » Fri Jan 25, 2013 10:10 pm

by jsu_work (730 Posts), Fri Jan 25, 2013 10:10 pm

That is horrible. Please try to find a doctor you can trust. At the end of this response are places to explain a little about each of these. A turn around is probable in most cases. The first thing to do is induce labor & give magnesium.
Okay.. what you are waiting on is an internal response to the body. The kidneys to return to normal and the liver to recover from having some serious issues. What you can look for is red, hot & very painful areas. These areas are near impossible to ignore. For the person going through them. If you notice a site like that let the nurse know. For a person with hellp dic has an approx 20% likely hood... A body will start clotting and then it runs out of clotting factors and can bleed. It helps to know how much clotting factor a person has. If it is below 80,000, they will consider a transfusion of clotting factor. I know that it can take a long time for a person to heal from this.
I had a mild case of hellp and a severe case of pre eclampsia. It took approx 6 months for my liver to return to normal. My kidneys were back online relatively quickly. If the protein in the urine does not go away, she may need dialysis. If she has swelling (edema), that is another sign the vascular tissue is not able to process water normally. If its in the ankles press finger in and see if it leaves an indention. If it does she has pitting edema. Make sure nurses and doctors are aware. Death from hellp is rare but it has occurred. The number one thing to do has been done. The baby has been delivered.
I hope this has helped more than it has scared you.
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Re: My sister is in intensive care, I need your info/tips,pl

Postby jsu_work » Fri Jan 25, 2013 10:13 pm

by jsu_work (730 Posts), Fri Jan 25, 2013 10:13 pm

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Re: My sister is in intensive care, I need your info/tips,pl

Postby catherine » Fri Jan 25, 2013 10:28 pm

by catherine (2832 Posts), Fri Jan 25, 2013 10:28 pm

Hi, welcome, I hope that we can be helpful to you in this time of great stress and anguish.

I think that from the sound of things that your sister is very ill. However, her baby has been safely delivered and is doing reasonably well. This is good because it allows your sister's physicians to focus exclusively on her well-being. Severe pre-eclampsia or HELLP syndrome are very acute and scary pregnancy complications. You must feel completely lost because these are rarely spoken about. On a positive note, many of us who have experienced these problems have been fortunate to make a complete recovery. That said, it can have very serious complication including severe liver and kidney disease that can even be fatal. Please know that we are sending your sister our best wishes for a rapid recovery.

There are no really valuable tips that we can offer except to recommend that you and your family take full advantage of all the support networks that are available to you at her medical facility. Don't be afraid to ask questions of her physicians and other health care providers. When I was sick we found it helpful to seek out people to ' mop up' after we had been briefed and after we'd had some time to assimilate the information. It's hard to ask the complicated questions when a flood of information is flowing your way. This forum is an excellent place to ask questions, you are also welcome to contact the Foundation directly. The important thing is that you should know that you are not alone. Many of our members have walked in your shoes as have the partners, parents, siblings or friends of someone whose pregnancy has been complicated by preeclampsia and we will do what we can to help you out. So keep posting your questions and concerns. You will find that we have a large community of people who have walked in your shoes and who will be happy to do what they can to help you out.
Mom to Finn, Lucy (HELLP syndrome) and Chloe
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Re: My sister is in intensive care, I need your info/tips,pl

Postby HerBrother » Sat Jan 26, 2013 06:42 am

by HerBrother (2 Posts), Sat Jan 26, 2013 06:42 am

Thank you all. But my sister is now diagnosed with Acute Fatty Liver of Pregrancy. We went from 1-2 in 1,000 to 1 in 15,000-60,000. Mortality rate is x20.

I don't know what else to say.
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Re: My sister is in intensive care, I need your info/tips,pl

Postby Lee2011 » Sun Jan 27, 2013 03:41 am

by Lee2011 (30 Posts), Sun Jan 27, 2013 03:41 am

I can offer no advice, above that already given, but just wanted to send long distance hugs to you and her whole family - she is in my thoughts and prayers.
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: My sister is in intensive care, I need your info/tips,pl

Postby tree » Mon Jan 28, 2013 02:09 pm

by tree (819 Posts), Mon Jan 28, 2013 02:09 pm

We are thinking of you all. How is your sister?
Daughter born April 2009 at 35 weeks due to Class 1 HELLP
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Re: My sister is in intensive care, I need your info/tips,pl

Postby sarahkm » Tue Feb 12, 2013 09:19 pm

by sarahkm (86 Posts), Tue Feb 12, 2013 09:19 pm

I am late to respond, but wanted to let you know that I was in your sister's condition 6 years ago. I was in ICU for 6 or 7 days, then in the hospital for another 10 days. My main problem was acute kidney failure and they started me on dialysis the day after my son was delivered (stillborn). I remained on dialysis for 3.5 months. My liver values went back to normal within 2 weeks and I went through 2 or 3 blood transfusions. My platelet numbers improved over 2 weeks but I was still anemic.

I just want to say that there is HOPE! I don't know if you believe in God, but praying doesn't hurt!! I was surrounded by friends and family praying for me.
Encourage your sister to fight, it is really difficult, but she can get through this!

I hope this note is not too late. Please update us!!

Sarah
Sarah (41)
Mother to Nathanael James born still 12/31/2006 at 38 weeks. Class I HELLP sydrome, placental abruption, acute kidney failure.
Miscarriage 12/2011
Expecting again-due date August 16, 2013 (Folic Acid, LDA, Prenatal vitamins, BP meds, Vitamin D, Slow release Iron)
Elias Nathanael born healthy 07/28/2013 at 37 weeks 2 days, 5#11oz. No signs of HELLP or preeclampsia! Tear noticed in placenta after delivery.
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