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.

Charlotte Family Working to Bring Awareness

The Spann Family

In December of 2010, Kristi Spann and her husband were expecting their first child. They were excited, scared but made it through a relatively easy first trimester. All that changed for Kristi in the second trimester.

Working as a nursing assistant in a local hospital, Kristi was at work when one day she didn’t feel well. She had one of the nurses on her floor check her blood pressure, and compared to her normal levels, it was a little high. She called her doctor, went in to see him the following day and after some tests was diagnosed with preeclampsia.

In just her 25th week of pregnancy, Kristi was put on strict bed rest and had every hope that she could make it full term. At home, she checked her blood pressure every 4 hours as instructed, but it gradually continued to get higher and her swelling increased.

Two weeks later, Kristi went in for an ultrasound and just didn’t feel well. Her doctor sent her home with a prescription for a possible urinary tract infection. That night she couldn’t get comfortable. She was having horrible pains under her ribcage, couldn’t lay down, couldn’t sit up, was nauseated, and had a horrible headache. Finally at 3 a.m., she woke her husband and told him to take her to the ER.

Once at the hospital, she was sent directly to Labor and Delivery. Initially, the doctor on call treated her for indigestion and merely checked to make sure she wasn’t dilated. Thankfully, they were still there at 7 am, when the shifts changed. The new doctor started running blood tests and did an ultrasound to make sure Kristi’s gallbladder could be ruled out as the culprit.

Around lunchtime, the doctor came in and this time had a diagnosis. Kristi had developed HELLP syndrome which she had never heard of. The doctor also informed her that a transport team was on its way to move her to a larger, more specialized hospital, and to not expect going home until her son was born. Kristi was 27 weeks pregnant and terrified.

Once she was at the new, larger hospital, the doctors placed Kristi on magnesium. Kristi remembers having “the worst headache ever.” Her blood pressure had reached 200’s/190’s. Her liver enzymes were through the roof, her blood platelet count was very low, and her vision had become extremely blurry. The only way to treat Kristi was delivery.

Doctors scheduled her C-section for the 24th hour after her 2nd steroid shot for her son Carson’s lungs. Carson was born weighing 2lbs, 8oz.

After Kristi came out of recovery, she still wasn’t allowed to get out of bed. Her blood pressure was still high and she had developed fluid on her lungs. Finally two days after her son was born, she was allowed to get out of her room to see her new little boy.

Kristi recovered in the hospital, struggling to understand what had happened and wondering if there was anything she could have done to prevent it. She recalled a kind nurse who stayed with her and assured her there was nothing she could have done to change things.

Kristi spent another few days in the hospital before being discharged, however Carson had to spend another eight weeks in the NICU before going home. Those were eight difficult weeks with Carson at a hospital an hour away from the Spann’s home.

Fortunately, Carson’s stay was a smooth one and he’s now as Kristi says, “a healthy, messy” two-year old little boy.

To walk with the Spann family and meet Kristi and Carson, register now at www.promisewalk.org/charlotte.

Dallas Family Making Strides

Many of our walks will feature a local family, their story of preeclampsia and how it has changed their lives.  As we move closer to Preeclampsia Awareness Month and the start of our walks, we’ll begin featuring these brave families each week with Mission Family Monday.

This week we are featuring the Lara family.

Christine Lara had preeclampsia during both of her pregnancies: what started out as “not feeling well” at 29 weeks led to the premature delivery of her son Christopher 10 weeks premature.

After experiencing an upset stomach, no appetite, back pain and gas, Christine contacted her doctor to come in for an appointment.  When she arrived, she met with the nurse practicioner who reviewed her symptoms but seemed unconcerned, that was until she took Christine’s blood pressure.  Not wanting to cause alarm, but needing to confirm the reading, the nurse took Christine’s blood pressure again.  When she was done, she had her lie down on her left side and said she would be right back.  At this point, Christine started to get a little worried.

That concern only grew when the nurse came in to tell her they were going to admit her to the hospital for observation.  A wheel chair came in and she was off.  She was hooked up to a BP monitor and told to be quiet and not stress.  It was not too long before her doctor came in and told her she had preeclampsia.  At 29 weeks, she was told that if her BP didn’t return to safe levels they would have to deliver via emergency C-section.

It was Wednesday, December 10.  She was due February 20.  Christine’s mind raced with all the plans she had for that remaining time, with the concern for her baby and with questions about what was happening to her body.

Christine was given a catheter and was hooked up to a magnesium sulfate drip.  They also gave her two steroid shots to boost her baby’s lungs in case they did deliver.  She was told to communicate with the nurse and doctors if she felt a head ache or if she had changes in her visions and they warned of risk of stroke or seizure.  Her mind was spinning…all she could remember was that the books said preeclampsia was fairly rare, that there were so many other things she thought pregnant women should worry about first.

The following evening Christine was hot, hungry, tired, and had a headache.  She let her nurse know and in twenty minutes, she was in the operating room.  Christine was able to only briefly see her son, Christopher, when they rolled him out the door to the NICU from the OR.  He weighed 3 lbs. 7 oz. and was 16.5 inches long.

Following delivery and on the way to her new room the nurses took her by the NICU to see Christopher.  She was wheeled in, bed and all, and able to see him in his isolette.  Christine recalls that “he was so small and hooked up to a ventilator and all kinds of tubes.  I got to touch his hand for the very first time though through a port hole in the isolette.”

Finally, a week after he was born, Christine was able to hold him for the first time. She says it was the best and scariest moment of her life.  He was so tiny, but so strong… he would lift his head when he heard his mommy talk to him.

Christopher spent 49 days in the NICU and is now a healthy, happy three year old.

A year later, Christine was pregnant again and at 32 weeks preeclampsia seemed to rear its ugly head again.  She was admitted to the hospital with high blood pressure.  At 35 weeks, she was once again having an emergency c-section and her daughter Katie was born weighing 5 lbs and 7 oz.  Katie, fortunately, never needed the NICU, and Christine was able to hold her almost immediately.

This time, however, Christine’s BP did not go down with delivery.  After spending a scary night, the day of delivery, Christine’s BP finally comes down and recovery sets in.  Both Katie and Christine were able to leave the hospital together and are now both in good health.

Christine and her husband Mark, along with their children Christopher and Katie, will kick off the festivities and share their inspiring story at the 2013 Dallas Fort Worth Promise Walk for Preeclampsia, on Saturday, May 18 at Gussie Field Watterworth Park in Farmers Branch, Texas.  The walk starts at 10:30 and will also feature snacks, a family friendly one- mile route, 5K fun run, silent auction, merchandise and a kids’ activity zone. To sign up, go to www.promisewalk.org/dallas.

 

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
.

Saying Goodbye to Heart Health Month, but Not to Heart Health

by Deborah Bush, Director of Communications

As we say goodbye to HEART HEALTH MONTH 2013, there is an important takeaway message: Pregnancy history is important to heart health every month of the year, not just in February.

Heart disease is the leading cause of death for women. Despite a downward trend over the last four decades, death rates from this disease now appear to be increasing in women aged 35 to 54 years.

We know that women who have had preeclampsia have approximately double the risk for heart disease and stroke during the subsequent five to fifteen-year period. Important factors to consider when determining cardiovascular impact include the severity of the mother’s preeclampsia, whether or not it recurred, and a history of low birth weight babies. Research studies have shown that the risk of pregnancy complications and later cardiovascular disease is cumulative; and women who experienced preeclampsia, preterm birth, and fetal growth restriction were found to have seven times the risk of hospital admission or death from coronary artery disease.

Keep in mind that, in addition to pregnancy history, there are many other factors that affect a woman’s heart health as she ages — but many of the risk factors for preeclampsia and diseases affecting your blood pressure and heart are the same. They include a family history of high blood pressure, heart disease and diabetes, being overweight, problems with blood clotting, and metabolic syndrome. If you had preeclampsia, it does not mean you will definitely develop heart problems, but for some women, pregnancy can be considered a failed stress test, possibly unmasking other health issues.

If you had preeclampsia during any of your pregnancies, you should take extra care to monitor the health of your heart, consider seeing a preventive cardiologist, and make lifestyle modifications now to reduce your risk. If you have other risk factors in addition to your history of preeclampsia, these steps become even more important.

New guidelines from the American Heart Association encourage assessment of a woman’s pregnancy history. You should let your health care providers know:

• the number of pregnancies you had,
• if you had preeclampsia or high blood pressure during any of them,
• if you had gestational diabetes during any of them,
• the number of miscarriages or stillbirths you had,
• if any of your babies were born early or small for gestational age, and
• the weight of your babies.

In addition to www.preeclampsia.org, additional pregnancy and heart health information can be found on Seconds Count, the patient website of the Society for Cardiovascular Angiography and Interventions (SCAI) ‑- www.scai.org/SecondsCount/Disease.

End February as Heart Awareness Month right by joining SCAI and the Preeclampsia Foundation for a WOMEN AND HEART HEALTH Twitter Chat today, Feb. 28 at 1:00 pm EST using the hashtag #heartchat. Follow us @preeclampsia.

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.