Family Team News

Register for March for Babies at

Wednesday, July 31, 2013

Geneticists Solve Mystery of Rare Birth Defect’s Variable Severity with Funding from March of Dimes

Todd P. Dezen, (914) 997-4608,
Elizabeth Lynch, (914) 997-4286,

COLD SPRING HARBOR, NY, JUNE 13, 2013 – With support from a March of Dimes Foundation grant, scientists at Cold Spring Harbor Laboratory (CSHL) have solved the mystery of why some infants are born with a severe form of a rare birth defect involving cleft palate and major deformities of the skin and limbs, while other babies with the same genetic disorder have little or no sign of the condition.
Ectodactyly, ectodermal dysplasia, clefting syndrome (EEC) has a known genetic culprit, a single altered “letter” in the DNA comprising a gene called p63. The gene provides cells with instructions on making a protein, also called p63, that has several essential functions, including during early development. When the gene is mutated, so is the protein it encodes, leading to the birth defects seen in EEC.
EEC is autosomal dominant, meaning that only one parent needs to contribute the mutated copy of the gene for a child to develop the disorder. Each child of an affected parent has a 50 percent chance of having EEC.

“But the big question is why some children with the mutation have severe birth defects, while others—in some cases, siblings of those affected—who bear the same p63 mutation, are mostly or entirely symptom-free,” says Professor Alea Mills, PhD, the CSHL geneticist who led the team that has just solved this mystery.
A complex series of genetic experiments directed by Prof. Mills now reveals that the presence or absence of one variant type of the p63 protein, called TAp63, acts as a modifier to determine whether or not a child with the p63 mutation will in fact develop EEC symptoms.

TAp63 normally protects from the birth defects, and if it is not present, pathology is certain to occur, the team’s experiments showed. “The only way you can have the EEC mutation and be healthy, or have slight symptoms of the illness such as a bit of webbing between two toes, is to have robust amounts of TAp63 protein in cells when and where it is needed, during development,” says Prof. Mills.
She hopes that her team’s discovery that TAp63 affects the presence of birth defects will encourage doctors treating children with EEC to compare those only mildly affected with siblings or other children who have a severe form of the disease.

“It will be important to sequence DNA from these children and compare the results. What’s different? If we find differences, we have nailed it. If we find that ¬¬¬the sequences are exactly the same, then we might look at several factors regulating gene expression for evidence of how TAp63 is expressed differently in each group.”
“An Allelic Series of Trp63 Mutations Defines TAp63 as a Modifier of EEC Syndrome” appears June 14, 2013 in the American Journal of Medical Genetics. The authors are Emma Vernersson Lindahl, Elvin L. Garcia, and Alea A. Mills. The paper can obtained using the DOI 10.1002/ajmg.a.36074.

The research was made possible by grants from the March of Dimes Foundation; the American Cancer Society; the Swedish Research Council; and the Lauri Strauss Leukemia Foundation.
The March of Dimes is the leading non-profit organization for pregnancy and baby health. With chapters nationwide and its premiere event, March for Babies©, the March of Dimes works to improve the health of babies by preventing birth defects, premature birth and infant mortality. For the latest resources and information, visit or Find us on Facebook and follow us on Twitter.

Monday, July 29, 2013

Craniofacial Birth Defects


About 7,000 babies in the U.S. are born each year with a cleft lip, cleft palate or both. These conditions, along with other birth defects of the head and face, are called craniofacial birth defects. July is National Cleft and Craniofacial Awareness and Prevention Month, so we think it’s a great opportunity for people to learn more about these conditions.

A cleft lip is a birth defect in which a baby’s upper lip doesn’t form completely and has an opening in it. A cleft palate is a similar birth defect in which a baby’s palate (roof of the mouth) doesn’t form completely and has an opening in it. These birth defects are called oral clefts and happen in the first 5-7 weeks of pregnancy.

   • Cleft lip and cleft palate affects about 4,200 babies each year. It is more common in Asians and certain Native Americans.

   • Nearly 2,600 babies are born with isolated cleft palate each year. Isolated cleft palate affects babies of all races about the same.

Can other birth defects happen along with oral clefts? Yes. There are about 400 health conditions (called syndromes) that are related to oral clefts. If your baby has an oral cleft, his provider checks him thoroughly for other birth defects soon after birth.

How does clefting happen? Well for the most part, we don’t really know. Most likely a number of genes and environmental factors play a role. Some studies have shown that folic acid may help prevent oral clefts—yet another good reason to make sure you take that 400mcg of folic acid before and during your early pregnancy!

Babies born with clefts may have trouble feeding, speech problems, dental issues, and more frequent ear infections. That is why most children born with clefts are seen by a team of specialists that includes a pediatrician, a dentist, an ENT (ear, nose, and throat specialist), and a speech-language specialist, an audiologist (hearing specialist) and a genetic counselor. That team can help with any issue that may arise.

You can read lots more about oral clefts on our website (click on In Depth, and select Cleft Lip and Palate) , or visit the CDC’s website.

Tags: , , , , ,

Wednesday, July 24, 2013

A father’s role in the NICU

Your beautiful baby has arrived. But he or she was born prematurely or is sick, and needs special care. Your joy over your baby’s birth may be mixed with worry and heartache. This is not how you expected fatherhood to begin.

The birth of a premature or sick baby is stressful and difficult for all family members. But it can be especially rough on you. You may worry about your baby and your partner, as well as other children at home, demands from your job and financial concerns. While each father develops his own way of coping with the birth of a premature or sick infant, this information may help make this difficult time a bit easier.

You may feel many conflicting emotions after your baby is born. These emotions, from anxiety and fear to anger and resentment, love and pride, helplessness and hope, can be very intense. All of the feelings are normal and most men experience some of them. As your baby gets stronger, your negative feelings may lessen. Expect this to be an emotional roller coaster ride for a while.

Keep in mind that the birth of a sick child can put stress on the relationship between you and your partner, as well as your relationships with other family members. It’s important to share your feelings with your partner through your baby’s illness, so that you can support each other and come through this experience a stronger team.

Read more about keeping your relationship strong, ways to help your partner and your baby, how to let others help you and how to take care of yourself in our article for dads. Being a NICU dad can be difficult, especially if your baby is very sick. You should take pride in all the things you do to help your baby and your partner, and realize that you are making a difference.

Monday, July 22, 2013

Undescended testes

Before birth, a boy baby’s testicles develop in his abdomen. As birth approaches, they normally drop, or descend, into his scrotum. In a small number of cases, however, one or both testicles will not descend. This occurs more often in boys who are born prematurely as their bodies have not had enough time to fully develop.

For many of these boys, the testicles will manage to descend within the first few months of life, but not for all boys. If the testicles appear to be present at certain times (especially when he’s warm) but not at others (especially when he’s cold) this is a sign that the testicles are acting normally (they move up into or drop out of the body cavity as his body temperature changes). But if he is comfortably warm and the scrotum looks lopsided because only one testicle is present, this is a sign that the other testicle may have failed to descend. This is a condition that your child’s health care provider will want to monitor.
If over time the testicle descends as it should, nothing need be done. If, however, it has not descended by the age of one year, treatment should be considered. Treatment usually involves surgery to bring the testicle into the scrotum. When an undescended testicle remains within the body cavity for over two years, the boy has an increased chance of infertility as an adult and my not be able to have children of his own. He may also have a slightly higher risk of developing testicular tumors. If, however, treatment at age one or one and a half successfully brings the testicle into a normal position, these risks usually do not apply.

Undescended testicles are not painful. Should your son complain of pain in the scrotal area, however, call his health provider right away. You’ll want to have him checked to make sure that there is no twisting of the undescended testicle that could lead to possible permanent damage.


Wednesday, July 17, 2013

Actress Sarah Michelle Gellar Joins March of Dimes on the sounds of Pertussis Campaign

Actress and mother of two Sarah Michelle Gellar is joining March of Dimes and Sanofi Pasteur on the Sounds of Pertussis®Campaign to help raise awareness about pertussis, also known as whooping cough, and the importance of adult vaccination. Pertussis is on the rise across the U.S., and infants and young children may be most vulnerable.

To view the multimedia content associated with this release, please click:

"The reality is that parents, grandparents and other family members may unknowingly spread pertussis to the babies in their lives," said Sarah Michelle Gellar. "That's why I was vaccinated and so was my family to help protect ourselves and to help stop the spread of the disease to my two children. Now, as the National Sounds of Pertussis Campaign Ambassador I'm urging adults everywhere to do the same."

Pertussis is a highly contagious and often serious disease, especially in young children. In 2012, there were more than 41,000 reported pertussis cases and 18 deaths in the U.S., with more than 83 percent of deaths occurring in infants younger than 12 months of age. Infants are particularly vulnerable to pertussis because they don't begin receiving their own vaccinations until they are two months old and may not be protected until they have received at least three doses of the infant DTaP (diphtheria, tetanus and acellular pertussis) vaccine. Researchers found that in cases where it could be determined how an infant caught pertussis, family members were responsible for spreading the disease to the baby up to 80 percent of the time. More specifically, parents were responsible up to 50 percent of the time.

"Immunity from early childhood pertussis vaccinations wears off after about five to 10 years, meaning even adults who were immunized as children may no longer be protected," said Siobhan M. Dolan, M.D., medical advisor to March of Dimes. "The best way for adults to help protect themselves and to help prevent the spread of the disease is to ensure they are vaccinated."

Gellar is encouraging parents of infants everywhere to use the Campaign's new Facebook application – the Breathing Room – that allows parents to send a brief message to family and friends in their Facebook network asking them to make the pledge to be vaccinated against pertussis before meeting the newborn in their life. Parents can personalize their own Breathing Room and help keep track of who in their child's circle of care has been, or pledges to be, vaccinated against this potentially fatal disease by populating their baby's virtual nursery with pictures of their family and friends from their Facebook network.

To learn more about the Sounds of Pertussis Campaign, please visit The website provides resources and educational tools, including information on the new Breathing Room Facebook app. Build a Breathing Room at

About Pertussis
Pertussis, also known as whooping cough, is a highly contagious and often serious disease, especially in young children. In adolescents and adults it is usually presented as a severe cough that may last for weeks and even months. Pertussis is caused by bacteria called Bordetella pertussis, found in the mouth, nose and throat of the person with the disease; it is spread through contact with respiratory droplets generated when that person coughs or sneezes. Pertussis disease can be treated with antibiotics. If caught early enough, antibiotic treatment may help lessen disease severity. Antibiotic therapy also helps reduce transmission and is important for disease control.

About the Sounds of Pertussis® Campaign
The Sounds of Pertussis® Campaign is a national education campaign from March of Dimes and Sanofi Pasteur to help raise awareness about the potential dangers of pertussis, also known as whooping cough, and the importance of adult tetanus, diphtheria and acellular pertussis (Tdap) vaccination.

Started in 2009, the Campaign continues to help educate parents, grandparents, caregivers and others in close contact with infants about the importance of getting vaccinated with the adult Tdap vaccine to help protect themselves and to help stop the spread of the disease to infants.

About March of Dimes

The March of Dimes is the leading non-profit organization for pregnancy and baby health. With chapters nationwide and its premiere event, March for Babies©, the March of Dimes works to improve the health of babies by preventing birth defects, premature birth and infant mortality. For the latest resources and information, visit or Find us on Facebook and follow us on Twitter.


Tuesday, July 16, 2013

Matthew's Journey

I had a lot of experience working with premature babies.  I was a Respiratory Therapist for a busy Neonatal Intensive Care Unit.  Working with premature babies every day made me almost numb, thinking it wouldn’t happen to my own child.  When I got pregnant, I was ecstatic!  I took good care of my body, eating healthy foods, taking my vitamins and drinking plenty of water.  I didn’t have any morning sickness and I felt great until I was about 11 weeks pregnant.  I began to have severe reflux and morning sickness around the clock. I just didn’t feel good, but everyone assumed it was normal pregnancy side effects

At 28 weeks I started to gain a lot of weight and became very swollen.  I felt awful and tried to get into the Obstetrician (OB) for a checkup, but there were no openings for several days.  The nurse advised me to rest and diuresis with tea and asparagus.  In the middle of the night on May 23 I woke up with severe pain in the middle of my stomach.  I contacted the on-call doctor and explained how I was feeling, like I was having severe heartburn in the wrong place. The doctor advised me to come in for an exam and testing.  I didn’t even take an overnight bag.  After a thorough exam I was found to have an elevated blood pressure and my blood tests results were not promising.  I had a complication with my pregnancy, HELLP syndrome.  My baby would have to be born right away, at 31 weeks gestation.  I couldn’t believe this was happening; it felt surreal.  There was no room at the hospital’s NICU that day so I was transferred to another facility; the hospital where I worked! I was started on Magnesium Sulfate which made me feel as if I was burning from the inside out, it was awful.  My blood pressure came down enough that we could wait a few hours before delivering and I was able to receive surfactant for the baby’s lungs to mature quickly.  Matthew was born 2 days later, 2 months early, weighing only 2 pounds 15 ounces.

Matthew’s stay in the NICU was 7 weeks long. He did great for the first 3 weeks and then developed meningitis.  I watched him deteriorate before my eyes.  He was emergently intubated with a breathing tube and placed on a ventilator to assist his breathing.  It was awful to watch helplessly.  Thank God for the doctors, nurses and respiratory therapists that day. They saved my Matthew’s life.  Today Matthew is a happy, healthy six-year old in first grade.  He loves to play soccer, Legos and read books.
Doctors don't know why HELLP Syndrome happens, but the only cure is to deliver the baby. Maybe with more funds for research, we can find a cause for HELLP syndrome and prevent others families from the experience we had.
One day... all babies will be born healthy.

Today... too many moms and families know the heartbreak of having a baby born fighting to survive.

Monday, July 15, 2013

An easy way to find resources for special needs kids

Finding the right resource to help your special needs child is so important for a parent. It can be a lifeline. I would like to introduce you to one resource that is a sort of clearinghouse to multiple resources. NICHCY, the National Dissemination Center for Children with Disabilities has a “gateway” that should be bookmarked on your computer. On this page you can find local and national organizations that are specific to a particular topic. For instance, if you select “Babies and toddlers” as your topic and “Early intervention” as your subtopic, a list of 14 organizations will pop up with descriptions and contact info. Likewise, if you click on “Disability” and “Developmental delay” you will find five resources. There are dozens more combinations that you can enter, which will bring you to desired resources. Exploring could not be easier.
So, let your mouse do the clicking and find many organizations and resources that are on target for your particular question. Simplify your life with this tool and perhaps you will find a gem or two that you did not know about, which will make a difference in your child’s life…and yours.

Have questions? Send them to

Note: This post is part of the weekly series Delays and disabilities – how to get help for your child. It was started on January 16, 2013 and appears every Wednesday. Feel free to go back to look at prior posts as the series builds on itself. As always, we welcome your comments and input.

Tags: Baby, child, delays, disabilities, early intervention, Help for your child, resources, special education, special needs child

Wednesday, July 10, 2013

Newborn jaundice

Jaundice is a yellow coloring of the skin and the whites of the eyes. It is caused by a build-up in the blood of a substance called bilirubin. Jaundice occurs in about 60 percent of all newborns.

A baby’s skin usually starts to turn yellow a few days after birth. In most cases, jaundice is mild and does not harm the baby. Mild jaundice goes away without treatment. However, babies with severe jaundice can have high bilirubin levels, which can pose a risk of brain damage.
The American Academy of Pediatrics (AAP) recommends that all babies be checked for jaundice with a physical exam, skin test or blood test before they leave the hospital. Babies should be examined again by a doctor or nurse at 3 to 5 days of age because this is the time when bilirubin levels are highest. When necessary, a baby can be treated to prevent bilirubin levels from getting too high.

Jaundice occurs when bilirubin builds up in the blood. Each day some red blood cells in everyone’s body are recycled. Bilirubin forms as these cells break down in the recycling process. Normally, the liver removes bilirubin from the blood. The liver of a newborn may be too immature to keep up with bilirubin removal, causing bilirubin to build up in the blood. This build-up turns the skin and, sometimes, the white part of eyes yellow. Premature babies have especially immature livers, making jaundice more likely.
Breastfed babies are more likely than formula-fed infants to develop jaundice. However, jaundice occurs mainly in babies who are not nursing well. These babies may not get enough calories and may become dehydrated, both of which may contribute to jaundice. This should not be a reason to avoid breastfeeding, however, as breast milk is the ideal food for babies and provides many health benefits, including reducing the risk of infections. Breastfeeding mothers should nurse their babies at least 8 to 12 times a day for the first several days of life to help keep their baby’s bilirubin level down.

So what should new parents look for? Yellow coloring usually first appears on the face and in the whites of the eyes. You often can tell if your baby has jaundice by looking at your baby under natural daylight or in a room that has fluorescent lights. If you think there is a yellowish color, you should contact your baby’s health care provider.
Most babies with jaundice do not need treatment, but some do and it’s important to have the health care provider make that decision. Providers sometimes suggest steps you can take at home to help clear up mild jaundice. They may recommend increasing the number of feedings to encourage more bowel movements, which helps eliminate bilirubin.

If your baby has more severe jaundice, however, your provider may recommend treatment. Phototherapy is a treatment you may have seen in the hospital. The baby, wearing only a small diaper, is placed under special white or blue lights called bili-lights. He wears shields to protect the eyes. The lights help change bilirubin into a form that can be eliminated easily in urine. In more serious cases, a blood transfusion may be necessary.

For additional information about newborn jaundice contact the American Academy of Pediatrics (AAP) or the Centers for Disease Control and Prevention.

Monday, July 8, 2013

The Great Grape Race at Elk Run 2013

Saturday, August 24, 2013
Time: 5:00 PM
Registration Time: 4:00 PM
Elk Run Vineyards
15113 Liberty Road
Mt. Airy , MD 21771

Join us at beautiful Elk Run Vineyards for a 5k race and wine tasting (Mountain Dew for those under 21) on Saturday, August 24, 2013.

Take a 5k run through Elk Run Vineyards before enjoying a sampling of their award-winning wines. The race will be timed by the Frederick Steeplechasers. Runners registered by July 15 will receive a commemorative performance t-shirt. Live music, food and raffles will make up the post-race festivities.

To Register

Click here to join us at the Great Grape Race at Elk Run.

Race REGISTRATION (includes race, wine tasting and performance race shirt): $40 per person.

Tasting & Event Admission Only: $15 per person.

Wednesday, July 3, 2013

Congratulations to our Maryland-National Capital Area Top 20 March for Babies Family Teams for 2013!

All of our March for Babies Family Teams worked hard to raise money for research and programs to prevent prematurity and birth defects.  Together, Family Teams in the March of Dimes Maryland-National Capital Area Chapter raised $700 thousand! We thank all of our Family Teams and volunteers for their dedication to the March of Dimes mission.


Team Name
Event Site Name
Washington D.C.
Skyler's Gift
Fairfax County
Greater Baltimore
WMC's team
Fairfax County
UBC Pacers
Caroline County
Stouffer Family
Fairfax County
Team Kristina
Frederick County
Tough as Steele
Fairfax County
Mikey III
Harford County
MOMS Club of California,MD
Southern Maryland
What happens in the NICU stays in the NICU!
Fairfax County
Team Cro 2013
Greater Baltimore
Logie's Team 2013
Frederick County
Team Aidan DC
Washington, D.C.
Trenton's Trotters
Caroline County
Never Forgotten Angels
Southern Maryland
Super-baby NJ
Montgomery County
Faith, Hope and Grace
Greater Baltimore
Team Ragan
Fairfax County
Team HPB
Harford County