Family Team News

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Monday, April 20, 2015

Baby’s genes may play a role in some premature births


Some babies seem to have a genetic predisposition to a higher risk of being born too soon. Changes in the baby’s DNA – not the mother’s – may be what triggers some early births.

In an exciting new study, researchers analyzed the number of copies of certain genes in the blood or saliva from hundreds of babies and their mothers. A gene is a part of your body’s cells that stores instructions for the way your body grows and works. What the scientists found may be somewhat surprising.  There was no link between the number of copies of the mother’s genes and the chances of a preterm baby. However, there was a two- to eleven-fold increase in premature births before 34 weeks of pregnancy when any of four genes were duplicated or seven genes were deleted in the babies born preterm, when compared to babies born full-term.

The researchers think that the differences in the number of copies of the genes may not be causing a preterm birth, but they may put a baby at a higher risk of infection or reacting to other harmful environmental factors that may trigger early labor and delivery.

“These findings may help explain what triggers early labor in some women even when they’ve done everything right during pregnancy and there’s no obvious cause for an early birth,” explained March of Dimes Chief Medical Officer Edward R. B. McCabe, MD, MPH. “The hope is that this finding may one day lead to a screening test to help identify which babies are at a higher risk of an early birth.”

Stay tuned for upcoming details. We will blog again when we have more information.

Wednesday, April 15, 2015

Why We Walk Wednesday! Riley, Baylee and Charleigh

This is my first year walking for March for Babies. In February 2014, my husband and I found out we were expecting. We were surprised at first, of course, but very happy to be given such a wonderful gift. In April, we found out we had triple the gift when it was revealed on an ultrasound that we conceived spontaneous triplets. We were beyond words and everything changed at that moment. As first time parents, we were scared to death. I was closely watched by several doctors and followed a different set of rules. We were expecting all girls. Two identicals Baby A Riley and Baby B Baylee and Baby C Charleigh, our fraternal.

My pregnancy was healthy for the most part and all three little girls were growing beautifully. Everything was great until June 30, 2014, which is a day I will never forget. It was a routine ultrasound that I received biweekly. They had found that Baylee’s heart had stopped suddenly, and they were unsure of the reason. There wasn't any sign of twin to twin or anything else. My heart broke to pieces and it will never be the same again. Since she was my middle baby, I would need to continue to carry her until I gave birth to her sisters. I was around 23 weeks along so she would still be born, just silently and very small. She was 5 oz at birth. Since I had to continue to carry her, my risk for preterm labor and other difficulties increased more than it already was. The rest of my pregnancy was full of fear and anxiety. I was watched even closer now, and by the gift of God, wonderful doctors and research, I made it to October 6 (36 weeks and 2 days). My late preemies did not need the NICU despite Charleigh being 4lbs due to becoming growth restricted and developing cord flow issues.

I am forever thankful for my doctors to getting me and my babies as far along as possible and watching us closely to keep us safe. My story could have turned out worse than it already was and that is unimaginable. I have decided that I want to do something every year for the good of others in honor of Baylee and my surviving triplets, Riley and Charleigh. What could be more appropriate than March for Babies? I want to help other families like ours. I want to help them have a better outcome than we did and be able to take all of their babies home whether they gave birth to one or to multiples. I want all babies and pregnant women to have the best care possible. I feel that I made it as far as I did because of the care I received and it is important for that level of care to continue to grow. Fundraising for this cause in honor of Baylee is helping my healing process, and I am just excited to make this a tradition.

Tuesday, April 14, 2015

Mr. Jon and Friends


DublinRoasters in Frederick, MD is hosting Mr. Jon and Friends in concert to support Team Six Little Feet and The March of Dimes.
Mr. Jon and Friends received the 2013 Parents Choice Award for his family-friendly children’s music. Bring your little ones and enjoy a free concert.  Donations are encouraged to support the mission of the March of Dimes. 
Date, Time and Location:  Saturday, April 18th, 2015, from 10:30am to 11:30am.  Dublin Roasters, 1780 North Market Street in Frederick, MD.
Proceeds from the events will fund vital research, grants, education, and advocacy to further the March of Dimes’ mission to improve infant health by preventing premature birth, birth defects, and infant mortality.

Monday, April 13, 2015

March of Dimes Celebrates Salk Vaccine 60th Anniversary

Dr. Peter Salk reveals the March of Dimes Silver Dollar featuring his father, Dr. Jonas Salk. April 12th is the 60th anniversary of the announcement that the Salk Polio vaccine was “safe and effective”. Coins can be purchased at 1.usa.gov/1MoGVwF. The March of Dimes is authorized to receive $10 from each silver dollar sold to help more moms have full-term pregnancies and healthy babies. (photo March of Dimes Foundation)
Vaccines are as critically important today as they were 60 years ago when the first polio vaccine, developed by Dr. Jonas Salk and his research team, was declared safe and effective.

April 12th marks the 60th anniversary of the day polio, “the killer, the crippler,” began loosening its grip on children nationwide.
The Centers for Disease Control and Prevention (CDC) calls vaccines one of the ten greatest health achievements of the 20th century. Yet measles and whooping cough are two examples of vaccine-preventable diseases that are on the increase as a result of declining immunization rates.

“Vaccines defeated diseases like polio, measles and pertussis,” says March of Dimes Chief Medical Officer Edward R. B. McCabe, MD, PhD. “Those vaccines were successful because of consistent, long-term efforts. This recent lapse in our vigilance and commitment allowed these deadly diseases to return and spread. The March of Dimes remains a staunch advocate for vaccination of all children and pregnant women in accordance with the CDC’s recommendations.”
Founded in 1938 by President Franklin D. Roosevelt to combat polio, the March of Dimes funded the development of the Salk and Sabin polio vaccines, and launched an immunization campaign that eliminated polio from the United States by 1979.

“These vaccines have brought this terrible epidemic disease under control that once killed or paralyzed thousands in this country each year. They had a tremendous impact on the nation, and with their use, the world is now on the brink of eradicating the polio virus completely,” says Peter L. Salk, MD, president of the Jonas Salk Legacy Foundation, a physician, medical researcher and the eldest son of Dr. Jonas Salk. “It is fitting to remember, during this 100th anniversary year of my father’s birth, that we can come together in the same way to solve other significant problems affecting the health of humanity.”

The United States Mint recently released a commemorative coin celebrating the March of Dimes history -- from conquering polio to championing the health of babies -- featuring Franklin D. Roosevelt and Dr. Jonas Salk, who were united by the March of Dimes work to conquer polio in the 1950’s.
“Holding the coin is holding a bit of the past, present and future in your hands,” says Elizabeth Roosevelt Johnston, FDR’s great-granddaughter, whose twins were born too soon and benefitted from the March of Dimes work. “This anniversary is very important to me. I’m proud to be connected to the March of Dimes, because this is a great organization that continues to help all babies get a healthy start in life.”

About the March of Dimes
Today, the March of Dimes, the leading non-profit organization for maternal and infant health, is hard at work to reduce the epidemic of premature birth, which affects nearly a half million babies in the U.S. and 15 million worldwide. In 2011, the organization established the March of Dimes Prematurity Research Center at Stanford University School of Medicine, bringing together the brightest minds from many disciplines to work together to determine the causes of preterm birth. The Ohio Collaborative, a partnership of the leading academic institutions, children’s hospitals and medical centers in Cincinnati, Columbus and Cleveland, was launched in 2013. Last year, research centers opened at Washington University in St. Louis and at the University of Pennsylvania. A fifth center is planned.
With chapters nationwide and its premier event, March for Babies, the March of Dimes works to improve the health of babies by preventing birth defects, premature birth and infant mortality. March for Babies is supported by number one corporate supporter, Kmart, and top sponsors Famous Footwear, Macy’s, Cigna, United Airlines and Mission Pharmacal.

For the latest resources and health information, visit our websites marchofdimes.org and nacersano.org. To participate in our annual signature fundraising event, visit marchforbabies.org. If you have been affected by prematurity or birth defects, visit our shareyourstory.org community to find comfort and support. For detailed national, state and local perinatal statistics, visit persistats.org. You can also find us on Facebook or follow us on Twitter.

 

Wednesday, April 8, 2015

Why We Walk Wednesday! Paige and Jackson

Like you, we did not prepare for this. You can never really prepare yourself for this…..the loss of a normal pregnancy, the birth of a premature baby and the long days of care they are going to require. The emotions that come with a premature birth are sometimes indescribable to the inexperienced and are certainly at times unbearable for those that do experience them.  You see and hear all the normal rhythms of a normal pregnancy and childbirth playing out all around you. You feel isolated and alone as you see and hear the other families celebrate their new “bundle of joy”.

We went through and felt all those things. Sometimes we still do. Two years later. We did have joyous, “normal” moments during our pregnancy.  Then, after being hospitalized for five days at 24 weeks gestation with pre-term labor, there was a last-minute, unplanned baby shower.

But on Monday September 17, at 25 weeks, we went in for a follow-up ultrasound. The ultrasound tech was not smiling as she had before. We were immediately admitted and stayed in the hospital for the next 12 days. Agonizingly watching contractions on a monitor and praying and hoping that we could somehow stop what seemed to be an inevitable, early conclusion. On September 29th, we were transferred here, to Franklin Square, because it seemed we weren’t going to be able to forestall the now unavoidable early delivery.

My wife and I are in the medical field and work as respiratory therapists. We knew all the statistics and outcomes but that knowledge and familiarity did not lessen the blow or fear. When the doctor came into the room and delivered the news that these babies were coming and there were no more options to delay, there was a feeling of panic and fear and denial. We hadn’t even picked names.

Paige Emerson and Jackson Phillip were born in the early hours of September 30, 2012 at 27 weeks gestation. Paige weighed two pounds two ounces; Jackson two pounds. I still remember the pin-drop silence in the operating room. It is a mixed-emotion, bittersweet moment. My wife, laying on the operating room table, just kept looking up at me and asking if they were OK. I could only say they were doing all they could. Paige and Jackson were taken to the NICU and away we went on the proverbial roller coaster.

Some people will tell you as you sit vigil at your baby’s isolette or crib that “everything will be OK”. It is hard to accept. It is the furthest thing from OK. Not right now. Being in the NICU is scary and hard and noisy and overwhelming. Life outside doesn’t seem to exist. We dealt with news of brain bleeds. Holes in hearts. Lungs that weren’t working. Infections. Ventilators. Tubes. IV’s. Apneas. Bradys. Lights.

The first couple weeks were the most difficult. While Paige and Jackson were hooked to equipment and were fighting hard and struggling we watched other babies come and go. But immediately, with the help of the doctors, nurses, RTs, family and friends we were able to somehow insulate and internalize all those emotions and hold and comfort and provide all the care that we could for Paige and Jackson. Those times were so special.  Day after day went by. We ate dinner in the hospital every night. My older children did homework in the hospital every night. We resolved that we were NOT leaving this hospital without our babies. And then something happened. As I reflect, I can’t pinpoint the exact day or moment, but the darkness that seemed to cast a shadow over everything started to illuminate. We celebrated things you never imagined you would, but things that were perfectly appropriate in our new world.  The 3, 4 and 5 pound club. Wearing clothes for the first time. Coming out of an isolette, affectionately referred to as their little house.  We cheered the simple acts of breathing. We held them skin-to-skin with joy and not with fear. We eventually even heard them break their silence and cry for the first time. We realized that our babies had a fight in them that was so far beyond their size. Each day that passed shed more and more light. I remember vividly a day when a next-door NICU mom who was getting ready to leave with her baby leaned over and said “your day will come”. It’s obvious to me now that she had come through the darkness and into the light. 121 days passed since we went to that ultrasound, 108 days since Paige and Jackson had come to meet us. It felt like a lifetime. We went to that ultrasound wearing shorts and short-sleeves. And then the leaves had changed colors. Halloween had come. Thanksgiving had come. Christmas and New year’s had come. And then finally Paige and Jackson’s day had come. They came home. All bundled up in the middle of winter. It was a strangely surreal experience. We had reluctantly driven away from the hospital every day for 107 days without a huge piece of our heart that laid behind in the NICU. But then we didn’t. In the van, we looked behind us to where Paige and Jackson now laid with us. We turned back around and cried an indescribable cry and nothing held us back. 

I tell people it was the hardest thing I have ever done. It still is. But you will derive strength from places and people unknown to you prior. Many times and mostly from that little baby that has a fight and strength you will hear called “a preemie fight”. Its like no other. Your day will come.

Wednesday, April 1, 2015

Why We Walk Wednesday! Amelia


Amelia was born two months too soon and weighed just 2 pounds, 3 ounces. During her two month stay in the Neonatal Intensive Care Unit (NICU), she received multiple blood transfusions and faced persistent breathing issues. Because the NICU was closed to siblings, her sisters Maddie and Tess, did not get to meet Amelia face to face until 63 days later when she came home. It was also her original due date. Amelia began receiving early intervention services when she was 6 months old, and she has always needed intensive learning support in school due to severe processing and archiving issues.

Today, Amelia is 11 years old and enjoys horseback riding, swimming. Her favorite activity is acting.
Amelia was honored recently at a Comcast Sportsnet banquet in Philadelphia featuring the defender for the Philadelphia Union Professional Soccer Team, Ray Gaddis. View the video. Ray joined Christy and her family to celebrate Amelia who was the recipient of a Shining Star Award at the gala.

Her tenacity and spirit (and her amazing family) have helped her to deal with developmental issues related to her premature birth. Congratulations to Amelia and family. You are our Shining Stars! :)




Wednesday, March 25, 2015

Why We Walk Wednesday: Marcus & Myles

The Kuhns’ road to parenthood was filled with doubt, uncertainty and loss. In the end they were blessed with two miracles. Conceived through IVF, Marcus Jaden was born at 32 weeks on October 12, 2009, weighing 4 lbs. 14oz. After six weeks in the NICU, he came home on an apnea monitor. Today, Marcus is a healthy 5-year-old. 

With their second son, Sarah began preterm labor at 30 weeks and received medication to stop the contractions.  On March 12, 2011, Myles Gavin was born at 36 weeks, weighing 7 lbs. 3 oz. He spent 12 days in the NICU with underdeveloped lungs. Myles is now healthy and almost 4. 

The Kuhns are grateful for the March of Dimes research that enabled Marcus to receive surfactant therapy for his lungs. Combined with Sarah’s own twin siblings, who lived only eight days due to prematurity, she and Jeff are dedicated to raising awareness and funds so that more babies are born healthy. They are our 2015 March for Babies-Western Maryland ambassadors. 

Monday, March 23, 2015

March for Babies 2015 Family Team Fundraising Rewards






THREE March for Babies Family Teams
have the chance to WIN!
 

Your choice: Walt Disney World, Orlando, Florida or Disneyland, California

One trip will be awarded in our New* Family Team drawing.

Two trips will be awarded in our drawing for any Family Team that meets the qualifications below.

Trip includes air travel, three-night hotel accommodations and a 2-day Park Hopper pass for four people.

 
Travel between June 1st – December 31st 2015 (some restrictions apply)**

How to Qualify for Entry into the Random Drawings:

1) Your team must have a minimum of 4 registered, fundraising walkers.***
2) Your team must raise at least $5,000 in a March for Babies event in 2015.
3) Your team must show at least a 10% year-over-year fundraising increase from 2014.****
4) All money must be received online or turned in to your local March of Dimes office by midnight on May 15th, 2015, to qualify.
5) You may also qualify by sending in your name, address and email address on a postcard (one per person) to Scott Archimbaud at March of Dimes Foundation, 1275 Mamaroneck Avenue, White Plains NY 10605 – no purchase or participation necessary.
6) Drawing to be held on May 26, 2015, at the March of Dimes national office in White Plains, New York.
7) This incentive is not open to March of Dimes employees or family members.

 * A new family team is a family team that registers and raises money for the first time in 2015

**Some flight and hotel restrictions may apply

***A fundraising walker is a person registered as part of a family team that has received funds

****Does not apply to new teams

See Fundraising Reward Rules on next page