A Tribute to Our Volunteers

Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it’s the only thing that ever has. ~Margaret Mead

Many words come to mind when describing a volunteer: devoted, inspiring, passionate. But those words feel pale & generic when faced with the deep motivation and strength that makes up the members of the Preeclampsia Foundation’s volunteer core.

Volunteers come to our Foundation for many different reasons: mourning the loss of a loved one. Mourning the loss of that “perfect” pregnancy experience. Celebrating their gratitude in having a new life. Honoring a loved one’s experience which they can only hope to never personally understand.

But they stay for one overwhelming reason. It is their desire that no woman & no family, should feel as alone, insecure and frightened as one does when faced with an overwhelming health crisis like preeclampsia, HELLP syndrome or eclampsia. From improving prenatal education to engaging with health care providers to supporting families after their preeclampsia experience, our volunteers are a family who support impacted families through every step of the journey!

This week many organizations are celebrating National Volunteer Appreciation Week, but words are simply not sufficient to describe why we love our volunteers, because without them, this Foundation would be nothing. We were started by “thoughtful, committed citizens,” and we continue to push our mission forward through an ever-increasing number of those citizens.

So to all of you out there supporting this cause and this Foundation’s mission of hope, we love you and your beautiful vision for what this world will look like without hypertensive disorders of pregnancy. THANK YOU!

San Jose Mission Family Walks in Memory of their Little Boy

Amy Hiett was pregnant with her fourth little boy when her world became forever changed.  She first had signs that something might be amiss at 26 weeks.  She went to the ER with headaches and vomiting and pain on her right side. Her labs came back ok, however, so she was sent home with what everyone thought was the stomach flu.

At her 30 weeks doctor appointment, after taking her blood pressure, her doctor immediately laid her on her side and said, “We need to get your BP down and your urine is +2. You will be on bed rest from here on out, and I need to prepare you for having a preemie because you will not make it to the end.”

As many other moms can attest to, bedrest when you have a child already at home is tough, when you have three kids at home, even harder.  But, Amy and her husband did the best they could to keep Amy rested and their baby well cared for.

At 34 weeks, on a Thursday, she went in for her weekly checkup.  She felt awful, but the doctor said her baby looked good.  He told her to be ready though, that they would deliver next week. Just five days later, at 35 weeks, she went in and told the doctor she was anxious and had insomnia because she was consumed with the thought of her baby dying.

Her doctor pulled out the Doppler and, sadly, found no heartbeat.  They then went into the ultrasound room.  Amy reclined in the chair and says she had “the most horrible feeling.” The next thing Amy heard was, “I’m so sorry, your baby is dead.”

Amy was sent to the hospital where her BP spiraled out of control, her head pounded and the pain on her right side had returned again. She was given three different BP meds and put on a mag drip, but her BP was still 197/107.  Amy was fading in and out, but remembers hearing her husband tell the doctor, “I can’t lose my wife too!”

She was taken in for a c-section and Amy recalls, “My headache went away on the table, and I looked over and there was our sweet still baby and my teary eyed husband.”

The next few months would be a blur of a funeral, confusion, slow speech, headaches, swelling and fear of leaving the house. After just over a year, Amy’s health problems are mostly gone, but the grief and fear, she says, “they creep in like ships in the night.”

Amy, her husband and their three other boys will be at the San Jose Promise Walk for Preeclampsia to share their story and remember their sweet son and brother, Seeley Andrew Hiett who came into this world still at 3 ½ pounds and 15 ½ inches long.

You can join them by registering now at www.promisewalk.org/sanjose.

Looking to HELLP Others in Richland Center

First time walk coordinator Kally Clary looks forward to a beautiful spring day when Richland Center, WI welcomes their first Promise Walk for Preeclampsia on May 11^th.

Kally has learned a great deal about preeclampsia and HELLP syndrome since her own diagnosis in January 2012.  She was 38 weeks pregnant and was being induced for persistent labor pains.  When her physician pulled blood work they found she had HELLP syndrome and she was immediately sent to a larger hospital where they performed an emergency c-section.

Kally’s son, Carson, is a healthy, happy baby boy, but due to her condition, she was under anesthesia for the birth and missed hearing his first cries and her husband missed cutting the cord.  She came home from the hospital and scoured the blogs and websites.  She found so many similar voices echoing her own frustration at the lack of answers about why she had been so sick and the inability to determine what would happen in any future pregnancies.

It’s that dissatisfaction with current information that led her to commit to coordinating this year’s Promise Walk in Richland Center.  She hopes to raise awareness within her community and meet their fundraising goal of $5300.  She also hopes that this will assist the Preeclampsia Foundation with their mission to work toward finding a cause and a cure for preeclampsia.

The Richland Center walk will include speakers, food, children’s activities, and of course, the walk.  Participants may enter the stroller decorating contest and you might even be lucky enough to score sippy cup or bottle from local sponsor, Nuk.

To register for the walk on May 11^th at Krouskop Park, go to www.promisewalk.org/richlandcenter.

Heart Failure Leads to Promise Walk Success

Amy, her daughter and husband.

Amy Suggs hopes with all her heart that she is able to raise awareness of preeclampsia in her hometown of Asheville, North Carolina when she kicks off the first annual Promise Walk for Preeclampsia there on Saturday, May 4^th.

Amy attended last year’s walk in Charlotte and had such a positive experience she decided to bring a Promise Walk to Asheville.  She hopes to educate those in her community on the signs and symptoms of preeclampsia and just how serious it can be.  Amy knows this all too well.

She was 38 weeks pregnant when she developed preeclampsia.  Her diagnosis came at a routine doctor appointment.  She was sent to immediately deliver her baby girl, Sutton, and all went well with delivery.  Amy, however, continued to be a very sick young woman eventually being diagnosed with congestive heart failure.

After being told she would need to be on medication for the rest of her life, Amy is now healthy and happily off all medication, surprising even her doctors.  When she’s not busy raising her now two-year old daughter, Amy is hard at work on her Promise Walk.

The Asheville walk hopes to attract 100 walkers from the area and raise at least $5000.  You can register for the Asheville Promise Walk held at the UNC, Asheville Track and Field at www.promisewalk.org/asheville.

Taking the Raleigh Reins

Richie, Molly and their miracle Payton with friends at the 2011 Raleigh Promise Walk.

For the past few years, Leanne Parke has led the charge for the Raleigh Promise Walk for Preeclampsia.  When Leanne’s family relocated to Hershey, Pennsylvania this past year, Molly Herring took over and kept the Promise Walk going.

Molly attended the last two years supporting the walk after her own struggle with preeclampsia.  At 29 weeks in her first pregnancy, she was diagnosed with severe preeclampsia and later with HELLP syndrome.  A day that began with plans to have her hair done and take her niece to the local fair turned into a frightened call to her husband telling him he needed to pack her bags and that she was being admitted to the hospital.

Doctors initially hoped to manage Molly’s preeclampsia, but once she developed HELLP, all bets were off and she was induced into labor.  Her daughter was born at 2 lbs, 12 oz and was so tiny her husband could put his wedding ring around her wrist.  Thankfully, today both Molly and her now two year old little girl have recovered and are healthy and happy.

Having enjoyed the sense of community and new friends that walks have given her in past years, Molly looks to share that with newcomers and return walkers in Raleigh.  Participants can expect to hear speakers, enjoy music and the silent auction.  Kids can jump in the bounce house or have their faces painted.

You can join the Raleigh Promise Walk by registering now at www.promisewalk.org/raleigh.  The walk takes place on Saturday, May 11^th at Apex Community Park.

Hallinan Family Works for Awareness in Philadelphia

Danielle, Matt and Annaliese Hallinan

Danielle Hallinan lost her baby daughter, Grace, to HELLP syndrome at only 24 weeks 6 days.  At 22 weeks she developed epigastric pain and called her OB about it.  They told her it was most likely heartburn, to take Zantac and if the pain continued, call them.

Her pain lessened that night, but continued off and on for about a week.  When she went in to see the doctor at her next appointment, the proteins in her urine were 3+ and she had gained 13lbs. in one month.  They sent her directly to the hospital for “more testing” where her blood pressure measured an incredible 221/113.

The ultrasound measured Danielle’s baby at only about 1 lb, but she was in there and kicking all around.  Her heartbeat was strong also. Once Danielle’s blood work came back, it showed her liver and kidneys were starting to shut down.  Delivery was scheduled within the hour.  Danielle’s baby Gracie came out kicking and screaming…literally.  The NICU doctors took her immediately, she weighed 14 oz.  Danielle was put on magnesium for the next 24 hours.  She got to see Gracie in the NICU, and even though she was hooked up to so many wires, she gripped onto Danielle’s finger as tight as she could.  Danielle recalls that, “Her eyes were still not open, and her tiny chest looked like it was working hard to take in oxygen.  They warned me it would be touch and go.”

The next afternoon, the doctors came in and told Danielle that Gracie’s esophagus wasn’t allowing a tube through to her stomach.  They thought it might not be developed all the way down or maybe there was a tear in it and they wanted to transfer her to Alfred I. DuPont Hospital for Children.  Before she left, they brought her in Danielle’s room to say goodbye.  Danielle said, “It broke my heart as she waved her little hand at me goodbye.  I know she knew I was there.”

Danielle’s sister, who is a nurse, and her mom stayed in Gracie’s room with her there.  Thursday morning, about 2am, Danielle got a phone call from the doctors at DuPont stating that they weren’t very hopeful about Grace’s progress.  She wasn’t doing well – her lungs weren’t getting oxygen to her blood and her oxygen saturation levels were very low.  At 7am, they called again and said that she was maxed out on meds and there was very little else they could do.  They said that Danielle should come to the hospital to see her daughter.

Danielle and her husband drove to Delaware to see Gracie.  They got to see her and touch her.  Gracie wasn’t moving at all, due to the medications that were sedating her and keeping her out of pain.  It wasn’t hopeful.  They were told they could leave her on the support system until her little body gave out, or they could take her off of it.  They decided that she was suffering and wanted doctors to disconnect everything.  After about fifteen minutes, they went back into her room to see her and hold her, but as soon as Danielle saw her little lifeless body she had to turn around and leave.  Danielle sat down in a chair nearby and sobbed.

When Danielle got pregnant again, she was armed with the knowledge that she would probably get preeclampsia or HELLP again, but was sure that she was doing everything possible to prolong a healthy pregnancy.  At 24 weeks, anxiety kicked in, depression and eating.  It was also when they got their diagnosis that their daughter had a birth defect called CDH, Congenital Diaphragmatic Hernia.  Annelise Nicole was born July 8, 2011 at 1:55pm via c-section at 34 weeks.  She was a fighter from the start.  After 81 days she left the NICU and came home.  Annelise is now a happy and healthy 18 month old.

You can meet the Hallinan family and Gracie’s little sister Annelise at the Philadelphia Promise Walk for Preeclampsia on May 11^th.  Register now at www.promisewalk.org/philadelphia.

The Loss of One Twin and Miraculous Survival of Another

Micro-preemies.  That’s the name given babies born at the teeny, tiny size at which Albany, NY Promise Walk for Preeclampsia Coordinator A. Kathya Stephenson’s baby girls were born.  Kennedy was a mere 14 oz and Kendyll was only 1 lb, 4 oz.  When you stop to think how very small that is, how very precious these little girls were, it’s even more amazing that Kendyll survived.

Kathya experienced preeclampsia and was forced to deliver her twin daughters.  Because of her illness, the girls were not receiving the proper nutrition they needed, so they were even smaller than their gestational age.  After her experience, Kathya was moved to take action and attended the 2012 New York City Promise Walk.

“As we released a balloon when we reached the middle of the Brooklyn Bridge,  I felt like we were sending a little gift to our little sweet angel in heaven,” said Kathya. She knew that she wanted to bring that same feeling of hope and love to her area to preeclampsia survivors and their families in upstate New York.

This will be her first year coordinating and she has big hopes for the Capital City walk.  Kathya aims to help educate others in her community about the symptoms of preeclampsia.  Through the work of their walk and volunteers, they hope to have Preeclampsia Foundation brochures in as many OB offices as they can.

You can join Kathya, her family and others at the walk on May 11^th at the Crossings of Colonie.  Kathya will be sharing her story and celebrating the life of Kendyll as well as remembering the brief time that Kennedy spent with them.

The Promise Walk will also include family activities, a raffle and music.

You can register now at www.promisewalk.org/albany.

One Family at a Time

The St. Louis volunteer team at their inaugural 2012 walk.

St Louis Promise Walk for Preeclampsia Coordinator Jen McCurdy sees her walk through both the heart of a survivor as well as the eyes of a therapist dedicated to helping families with birth psychology and reproductive health issues.

Her journey to the Promise Walks truly started with her first pregnancy.  She was 37 weeks pregnant when she woke up feeling flu-like only to find out it was much more serious.  Her blood pressure had spiked and she was diagnosed with preeclampsia and HELLP syndrome.  Her little boy was born healthy and she later went on to have another pregnancy.  Once again, not able to avoid preeclampsia, this time she ended her pregnancy at 35 weeks after two placental abruptions and an emergency c-section.  Thankfully, her son survived as well.

In St Louis’ second year of their Promise Walk, the team of coordinators hope to raise $9000 and have as many as 200 in attendance.  Jen hopes that their walk provides comfort to those touched by the disease as well as awareness of the illness to those who may not have yet heard of preeclampsia and its symptoms.  She subscribes to the notion of the “walking wounded” and believes her work for the Preeclampsia Foundation helps heal her lingering emotional wounds.

Ultimately, Jen would like to find a cure for preeclampsia, but will be thrilled and feel successful knowing that if she has helped create an event that touches and brings comfort to just one family, she will have done a powerful thing.

Held at Millennium Park in Creve Coeur, the St Louis Promise Walk is Saturday, May 18th.  You can register online at http://www.promisewalk.org/stlouis.

Unique Stories With Common Threads

So many preeclampsia survivors enter a doctor’s office or hospital as pregnant women with a concern, a symptom, a feeling something is not right and then many days or weeks later leave the hospital a changed woman touched by this disease in a way they never realized they could be. After all, in this day and age, women and babies don’t die, right?  You pass the first trimester and it’s smooth sailing, right?

Phoenix Promise Walk Coordinator Rafelle Deyle knows all too well that risk is not gone once you cross that line into the supposed ”honeymoon phase” of the second trimester. Rafelle was diagnosed with preeclampsia at 25 weeks and three days. Doctors tried to treat her disease and allow time for her baby girl to grow and gain strength, but at 26 weeks and four days, Rafelle was forced to deliver due to her failing health. She left the hospital heartbroken.

Her pain is her own, the exact progression of her disease is her own, but so many of us have followed this similar path and come home from the hospital to search the internet for answers to what happened to us rather than being on the internet like we’d planned to at 26 weeks to check our registries for what new things someone may have bought us.

That common internet search, “preeclampsia,” and Rafelle, like many of her preeclampsia sisters, found the Preeclampsia Foundation. She attended the 2011 San Diego Promise Walk for Preeclampsia and experienced a sense of community and support that further inspired her to bring a Promise Walk to her hometown of Phoenix.

In her inaugural year, Rafelle hopes that the Phoenix Promise Walk will bring awareness of the signs and symptoms of preeclampsia. Long term, she hopes to raise enough money to find a cause and cure so other families don’t go through what she has gone through.

The Phoenix Promise Walk will offer not only the 3k walk, but also face painting for the kids and a fun cake walk. If you’d like to join Rafelle in Phoenix on May 4th or find a Promise Walk near you, go to www.promisewalk.org to register or donate now.

Looking for Her Own Silver Lining Playbook

First time coordinator Sara Scheirer Collins is looking to find something positive from her own traumatic pregnancy experiences.  After developing HELLP Syndrome in her first pregnancy and severe preeclampsia in her second, Sara hopes to spread the message of awareness in Greenwood, South Carolina.

Following the belief that knowledge is power, the Greenwood Promise Walk for Preeclampsia plans to reach at least 100 community members as well as partner with local physicians.  Additionally, the Promise Walk will honor local mothers and babies who have experienced preeclampsia with a table set up displaying their photos and stories.

Looking to strike a fun, family tone as well, Sara promises a “short and sweet one mile walk,” kids’ activities and a hot dog and bake sale.  Sara believes that if she “can provide useful information and bring awareness to at least one mother and child who may face the same situation, then I will be happy with the results of this walk.”  She’ll have found her silver lining.

The Greenwood Promise Walk will be held at the Greenwood Civic Center on May 18^th.  To register, go to www.promisewalk.org/greenwood.