Posts Tagged ‘HELLP syndrome’

How my baby and I survived preeclampsia

Friday, May 13th, 2016

For Preeclampsia Awareness Month, we are grateful to one mom for sharing her story with us.

In my fight against preeclampsia, I advocated for myself and my baby and ended up saving both of our lives.

It started at about 22 weeks of pregnancy, when I had trouble with my eyes. I started to step down onto an escalator and realized I couldn’t see where one step stopped and the next started. My doctor reassured me that eye changes were normal.

By 24 weeks, more symptoms popped up. I was very itchy, my ankles were swollen and I had trouble breathing when reclining. The nurse told me that was normal.

By 25 weeks, the symptoms increased. I never had the urge to urinate and when I did, it was orangish brown. My ankles were so swollen that I had to lift up the skin to slide on a pair of shoes that were two sizes too big.

I called the doctor’s office and was told that my appointment was in 9 days and they would see me then. I decided to check my blood pressure on my own so I drove to a local supermarket and checked my blood pressure at the pharmacy. It was 180/120. I was shocked! I took it again and got the same results.

Feeling concerned, I drove to the doctor’s office. Within an hour, I was diagnosed with severe preeclampsia (my protein came back at +5) and I was on my way to the hospital for bedrest. I had a seizure within the hour of being admitted in the hospital when my blood pressure reached 240/180.

Two days later, after my 24 hour urine test came back at +19 and I was showing signs of HELLP Syndrome, I was put on mag sulfate and transferred to a new hospital with a high risk OB and an OB-ICU. More importantly, it was located next door to a hospital with a Level 4 NICU.

Preemie baby due to preeclampsiaUnfortunately, my condition worsened that night and by the next evening I was in liver and kidney failure. An emergency C-section was ordered and my daughter was born a few hours later at just 25 weeks and 5 days. She weighed 1lb, 10 oz and was 13” long.

She went on to spend 90 days in the NICU. She had a PDA ligation, a feeding tube and was vented for a month. She came home on oxygen and with the feeding tube but both were removed within a month of coming home. She is now 14 years old, an 8th grade honors student and a competitive gymnast. She is also an only child.

As for me, I spent another 3 weeks on blood pressure medicine. Ten years later, I was diagnosed with diabetes and required 3 stents in my heart. It was also found that my heart had sustained damage during my pregnancy and was severely underperforming. I went through cardiac rehab and will have to be followed by a cardiologist for the rest of my life. Research shows that women who develop preeclampsia have a much greater risk of heart disease and stroke.

If I have one message to share with all pregnant women, it would be to trust your instincts. If you don’t feel right – go get checked. In my case, it saved both my life and my child’s.

Are you a preeclampsia survivor? We hope you’ll share your story below, to help other moms and babies.

Learn more about the life-long effects of preeclampsia and HELLP syndrome.

Upcoming chats

Monday, May 19th, 2014

woman-on-laptopJoin us on Twitter for two exciting chats that we have coming up very soon.

About 1 out of every 8 women have postpartum depression after delivery. It is not your fault.  On Wednesday, May 21 at 2pm ET we will be joining MomsRising, for their #WellnessWed chat. This week they will be discussing postpartum care and depression. This is an important topic for all new moms and pregnant women as well, so you can learn what to expect after your baby is born. Joining us will be the U.S. Department of Health and Human Services; Katherine Stone, a blogger with the BlogHer network, and Kaiser Permanente.

And on Thursday, May 29 at 1pm ET we will be a guest in a #PreAm14 chat on how preeclampsia affects your baby with the Preeclampsia Foundation. Learn more about this dangerous condition and some of its warning signs. If you have battled with preeclampsia or HELLP syndrome, share your experience, tell us what helped you get through it, what advice you have for other pregnant women.

We hope to see you at both chats!

Meet Nina – our 2013 National Ambassador

Monday, January 7th, 2013

nina-centofanti1Chris and Vince Centofanti thought they knew all about preterm birth. She was a neonatal nurse-practitioner caring for critically ill babies, and he worked for GE Healthcare’s Maternal-Infant Care division, providing specialized medical equipment to hospitals. But then their own baby, Nina, was born nine weeks early, weighing less than three pounds.  She suffered from respiratory distress and spent her first five weeks fighting for life in a newborn intensive care unit (NICU).

“I can’t tell you how difficult it was, seeing our own little girl lying in the NICU, fighting for life. All our hopes and dreams for her hung in the balance,” says Chris Centofanti.  “As a nurse-practitioner I’ve seen many other parents in this situation, and now I know exactly how they feel.” “I never expected that my own daughter would have to be cared for in a NICU with the equipment I had provided to the hospital,” says Vince Centofanti.

While pregnant with Nina, Chris felt unwell at 31 weeks and went to the hospital. She was diagnosed with HELLP Syndrome, a form of high blood pressure with elevated liver enzymes and a low blood platelet count. It is a rare, but potentially life-threatening illness that typically occurs late in pregnancy. The only treatment is to deliver the baby as soon as possible. For the next 48 hours, Chris was treated with steroids to help develop baby Nina’s lungs before birth. At birth, Nina was immediately transferred to the NICU, where she spent the next five weeks.

In addition to Nina, the Centofantis have an older son Nick, and a second daughter, Mia, who was born at 35 weeks of pregnancy, thanks in part to weekly progesterone treatments which reduced the risk of Chris going into premature labor. “Even though things didn’t go as planned, we’ve been blessed with three healthy children, thanks in large part to the work of the March of Dimes.  Just a few years ago, the outcome might be been very different,” says Chris.  She adds, “Thanks to the care that Nina received, and the support of the March of Dimes for research and treatment, now we also know the relief and joy parents feel when their child survives and becomes healthy enough to leave the NICU and go home.”

Today Nina Centofanti has grown into an active 7-year-old who loves to dance, climb trees and turn handsprings. She has been named the March of Dimes 2013 National Ambassador. As ambassador, Nina and her family will travel the United States visiting public officials and corporate sponsors, and encouraging people to participate in the March of Dimes’ largest fundraiser, March for Babies. The money raised supports community programs that help moms have healthy, full term pregnancies, and funds research to find answers to the problems that threaten babies’ lives.

“Serving as the National Ambassador family is a way for us to show our appreciation for our children’s good health, and serve as advocates for lifesaving March of Dimes programs,” says Vince.  “The March of Dimes has provided 75 years of support for research, treatments, educational and prenatal care programs that has saved lives, reduced the suffering, and improved the quality of life for countless children and the parents who love them. My daughter Nina is one of their success stories; a perfect example of what March of Dimes efforts have accomplished.”

The pain of preeclampsia

Tuesday, May 3rd, 2011

May is Preeclampsia Awareness Month. Our guest post today is a personal story from Meredith Drews of the Preeclampsia Foundation.

I am the mother of four—but I only get to kiss two of my children goodnight.  I have two boys, Thomas and Henry, and two daughters, Bridget and Elsie.  Thomas is five, plays t-ball, gymnastics and thinks Justin Beiber is cool.  Henry is two, adores his big brother, loves Mickey Mouse and is talking like crazy.  Bridget and Elsie died an hour after they were both born. They should be three years old.

It was my second pregnancy and we were shocked with spontaneous twins.  Once the surprise wore off, we adjusted to the idea and to the never-ending question: “Do twins run in your family?”
 
My twenty week ultrasound came and went… in this time we’d learned the twins were both girls; we’d just picked out names, the excitement was building, the reality settling in.  Two weeks or so after my “grand” ultrasound I went back to my OB for a check-up.  We did growth checks at each appointment and the girls’ heads had grown in two weeks, but not their stomachs.  My doctor was concerned and sent me home on bedrest for two weeks. I never made it that far.

A little more than a week later I called my doctor at 5 am in the morning.  I asked to come in and she said absolutely. I wasn’t swelling.  I thought maybe I had “floaters” in my eyes.  My urine was dark. I had bruising on my legs.  I’d had a nose bleed a few days earlier that I had trouble stopping.  There was no pain under my right ribcage, but I had had a pain in my right shoulder for nearly a week.

I knew preeclampsia could be a concern because of the visual disturbances.  My blood pressure was higher. I was spilling protein in my urine. My doctor sent me to the hospital, where things went from bad to horrific.  I was told I would be in the hospital at least a week. Then my doctor and MFM delivered the bad news: I had preeclampsia and HELLP syndrome (which I had NEVER heard of).  I needed to deliver right away.  If we chose to deliver cesarean, it would give the girls the best shot, but be very risky to me (with low platelets I could bleed to death), or, I could deliver vaginally and not attempt to save my daughters.

I had to call my husband over the phone with this news and we agreed the best thing to do would be to deliver vaginally, not risk all three of us and leave behind our son without his mother.  Every kick I felt inside me was gut-wrenching, knowing these little babies I’d tried so hard to keep safe were dying.  Unable to have an epidural, I felt every push of labor, heard all the crying in the room from doctors and nurses and my husband.  We heard a deafening silence from our baby girls.

We held our daughters in our arms as they died.

I couldn’t believe this had happened to me.  I still can’t.  I recovered in the hospital another five days and went home to my computer, searching for information and found the Preeclampsia Foundation.  I found information and support which helped me stay informed through my third pregnancy, just three months after we lost our girls.  In time, I have found a place and means to give meaning to my daughters’ one hour of life through the volunteer work I do.
 
I will never understand why this had to happen, but I someday hope to know what happened to cause my body to betray me like that.  I want to know how it happened and how others can prevent it.  Really… I want my baby girls back… but I’m very blessed to have my own health and my sweet, perfect two little boys—both born completely preeclampsia-free.

You can join us for a live chat about preeclampsia on May 11th at 2 PM EST. You’ll find us, and our guests from the Preeclampsia Foundation, on Twitter at #pregnancychat.

Preeclampsia and HELLP syndrome

Thursday, May 20th, 2010

Today we are pleased to have a guest post from Beth Frazer, a preeclampsia and HELLP syndrome survivor, and a volunteer with the Preeclampsia Foundation.

I remember the first time I heard the word “preeclampsia:” it was November 10, 2008, and I was blissfully pregnant with twins.  Although this was my first pregnancy, I am a practicing attorney with a propensity to research and so considered myself to be an “educated” patient.  I believed that everything was progressing perfectly.  I thought that my headaches, blurred vision, shortness of breath, sudden weight gain, and swelling were all a normal part of pregnancy.  In actuality, however, these were all signs that my kidneys and liver were shutting down, my red blood cells were destroying themselves, and my brain was swelling.

Fortunately, I was scheduled to have a routine OB appointment that day, at which time a urine test revealed that I was spilling protein.  Several hours later I was diagnosed with HELLP Syndrome,  a severe variant of preeclampsia, and was told that I was dying.  Two days later our beautiful twins were born, 20 weeks premature and too small to survive.  My doctor said that, had my OB appointment been scheduled even 48 hours later I would have suffered a massive seizure or hemorrhage.  I had no idea that my symptoms were actually serious warning signs.

I now know that preeclampsia, often described as a hypertensive disorder of pregnancy or by the old fashioned term “toxemia,”  is a known cause of premature births in the U.S. and is a leading cause of maternal and neonatal death.  It is the reason that a pregnant woman’s urine and blood pressure are tested at every OB appointment.  But I never heard of it before.  I was left physically weak, heartbroken, and completely confused.

I set out to learn everything I could about what had happened to me, and figure out whether it would happen again.  In doing so I found the Preeclampsia Foundation,  and I realized that I wasn’t alone.  I found tens of thousands of women have suffered situations similar to mine, most of whom had also been unaware of preeclampsia before their own diagnosis.

I learned that preeclampsia has no known cause, and has no known cure other than immediate delivery of the baby.  If it is diagnosed early enough, however, preeclampsia can often be managed, allowing the pregnancy to progress a bit further and result in better outcomes for both mother and baby.  I studied the signs and symptoms of preeclampsia.  I analyzed the different ways it presents itself, from the classic case of a pregnant woman whose blood pressure creeps up during her third trimester, to more unusual cases like my own.  I researched the latest tests and theories and medical developments.

And, finally, my husband and I met with our Maternal Fetal Medicine specialist (“MFM”), a high-risk OB, to discuss our future.  We discussed the risk factors for preeclampsia, which include a history of preeclampsia, particularly preeclampsia before the third trimester.  I underwent testing and learned that I might have blood-clotting disorders, which might also put me at risk for preeclampsia.  Nonetheless, my MFM felt that awareness and treatment of these risk factors would allow us to successfully manage a future pregnancy.

Armed with the blessing of my MFM and knowledge of preeclampsia’s signs and symptoms, I became pregnant again.  Those first few months were terrifying and anxiety-ridden.  My MFM monitored my blood pressure, blood work, and urine protein levels constantly, as well as the development of my baby– first every other week, then every week, then twice a week.    Being informed empowered me, and I was reassured knowing that I recognized those symptoms that needed to be reported and acted upon.

We all held our breath as slowly but surely milestones were met.  First, 20 weeks, when I previously developed preeclampsia, then 24 weeks: viability.  Then 28 weeks.  Then 30 weeks and 32 weeks, then 34. . .

And, urprisingly, preeclampsia never developed!  I sit here now with a beautiful baby boy snuggled up on my lap.  Born full term and healthy, he is a true testament to the power of preeclampsia education and awareness.

It is possible to have a healthy mother and baby after a preeclampsia diagnosis, or even after a preeclamptic pregnancy!   The key is to not only receive regular prenatal care, but also be your own advocate.  Know the signs, know the symptoms, know your body, and trust yourself.