Up to date Family Team News

Friday, April 18, 2014

Updated guidelines for water birth

Water birth is the process of giving birth in a tub of warm water.  A few weeks ago the American College of Obstetricians and Gynecologists (ACOG) and the American Academy of Pediatrics (AAP) released a joint committee opinion regarding laboring and delivering in water. In it they state that “Undergoing the early stages of labor in a birthing pool may offer some advantages to pregnant women. However, underwater delivery has no proven benefit to women or babies and may even pose a risk of serious health problems for the newborn.”

It is important to understand that the committee does make a distinction between laboring in water and delivering in water.  They acknowledge that there may be some benefits to being in the water during the early stages of labor. For women who have uncomplicated pregnancies, laboring in water may result in decreased pain, reduced use of anesthesia, and shorter labors. However there is no evidence that immersion in water during the first stage of labor otherwise improves perinatal outcomes. And being immersed in water during the first stage of labor should not prevent appropriate maternal and fetal monitoring.

However, the committee did express concerns about a woman actually delivering her baby in water. They found that “the safety and efficacy of immersion in water during the second stage of labor [delivery] have not been established, and immersion in water during the second stage of labor has not been associated with maternal or fetal benefit.”

After reviewing studies on water births they found a risk of severe complications in the newborn, including
•    maternal and neonatal infections, particularly with ruptured membranes;
•    difficulties in newborn temperature regulation;
•    umbilical cord rupture while the newborn infant is lifted or maneuvered through and from the underwater pool at delivery, which leads to serious hemorrhage and shock; and
•    respiratory distress that results from tub-water aspiration (drowning or near drowning).

While these complications of water birth may be rare, they are very serious. Until more thorough studies are done and the benefits of delivering in water to both mother and baby have been proven, both ACOG and AAP suggest that deliveries in water should be done in a research setting with mothers being fully informed about the potential risks and benefits.


Wednesday, April 16, 2014

Why We Walk Wednesday: Lucky Luke

A year and a half ago, the Hemmila family's world was changed forever when a precious little boy decided to come into this world nine weeks early.  
After a whirlwind of a delivery, they were the proud parents of a baby boy, Luke Alexander, weighing 4 pounds 6 ounces and 17 inches long. Luke spent a total of 29 days in the NICU, but he came home without any major health issues.

His family has encountered some challenges though, such as Luke having to wear a helmet for a few months, getting the croup in his first spring and a heart murmur they have to keep an eye on due to a slow developing heart. His mom shared that overall Luke is now a healthy, happy, crazy little boy. 
Without the help of the March of Dimes (their research, their medical advances, their resources, etc.), they feel that their story would be very different.

They walk to remember this and to remember those who aren't as lucky as “Lucky Luke.” 
They walk to show people that these babies are amazing and strong from the moment they arrive. 
They walk to show parents that they aren’t alone in this battle. 
And, they walk to show the world that although small, they are mighty. 

Monday, April 14, 2014

IEP reviews in April

If your child has a disability and has an IEP, you may already know that April is usually the month when mandatory yearly reviews and IEP updates happen.

An IEP is short for Individualized Education Program. It is both a process and a written educational plan for a child with a disability,  age 3 and older. It is a document that lists all of the educational services that your child will receive, if he qualifies. Here is a quick review and resources to help you with the process. (See prior posts, for info on IFSPs for babies and toddlers.)

The IEP is:

INDIVIDUALIZED – specific for your child’s needs. It is not one size fits all.

EDUCATIONAL – it should look at three main areas of your child’s life:  the general education curriculum, extracurricular activities and nonacademic activities.

A PROGRAM or PLAN – all of the services your child will receive are laid out and detailed in writing.

What’s in an IEP?

The IEP may include special education, related services and/or supplementary aids and services. The IEP is first based on your child’s “present levels” which is a snapshot of your child’s function. In other words…what he is able to do now as compared to his non-disabled peers. Then, based on his present levels and his delay or disability, the IEP sets measurable annual goals.

The IEP should specify:

• Who will provide the service (eg. the speech therapist, regular ed teacher, special ed teacher, reading specialist, physical therapist, etc.).

• What kind of service will be provided, such as curriculum modifications or adaptations, the types of related services or aids- (eg. specialized reading curriculum, speech therapy etc.).

• Where the service will be implemented (eg. the regular ed classroom, playground, counselor’s office, etc.).

• When parents will receive reports on how well your child is doing. By law, you need to receive progress reports at least as often as children without disabilities. Often a school system will send home the IEP progress reports with Report Cards.

• When the goal will be achieved (eg. by the end of the marking period or by the end of the year).

• How the goal will be measured and how you will know the goal has been achieved (eg. a benchmark, such as a test score that shows if the goal has been reached).

Remember, an IEP is a living document that can be changed or updated by the IEP team, of which parents are members! It must be reviewed by the IEP team at least once a year, but it can be reviewed and updated more often if necessary.

Need more help?

A great place to go to understand your options and how to prepare for IEP meetings is on NICHCY’s website. In particular, you can find guidance on how an IEP team can write IEP goals. Keep in mind that NICHCY’s site will only be up until September 2014. Fortunately, you can find help by visiting your state’s Parent Training and Information Center (PTI), which is an information resource for parents of children with disabilities. Every state has at least one PTI. Each one has a different name. For example, one of the PTIs in California is named Matrix Parent Network and Resource Center while the PTI in New Hampshire is called the Parent Information Center. Whatever the actual name, each is commonly known as a PTI.

Some states also have Community Parent Resource Centers (CPRCs). CPRCs do the same work as the PTIs, but they focus on reaching underserved parents of children with disabilities, such as those living in a specific area in the state, those with low income, or those with limited English skills. Locate your state’s Centers  and read more about how PTIs and CPACs can help you.

You can also find excellent guidance on how to write IEP goals at Wrightslaw.

Lastly, review previous News Moms Need blog posts to zero in on where you need a refresher. Here is a Table of Contents of many prior posts, including several on IEPs.

Bottom line

April not only brings showers for May flowers; it is the month when most school systems begin reviewing and tweaking IEPs. With the resources in this post, you will be prepared and ready to play an active role in the process.

Note:  This post is part of the weekly series Delays and disabilities – how to get help for your child. It was started in January 2013 and appears every Wednesday. Go to News Moms Need and click on “Help for your child” on the Categories menu on the right side to view all of the blog posts to date (just keep scrolling down). We welcome your comments and input. If you have questions, please send them to AskUs@marchofdimes.com.

Tags: birth defect, child, CPAC, delays, disabilities, early intervention, IEP, PTI, resources, special education


Wednesday, April 9, 2014

Why We Walk Wednesday: The Turner Twins

This week, a mom of preemie girls shares why she will March for Babies
On October 9, I was transferred from Civista (now Charles Regional) to University of Maryland Hospital in Baltimore by helicopter. I was just 23 weeks pregnant and having contractions. After a few weeks of bed rest, my twin girls were born at 26 weeks, 4 days. Abigail weighed 1 pound, 11 ounces. Elizabeth was 2 pounds, 4 ounces. They were micro preemies struggling to survive. 
At two weeks old, my husband and I got the horrible news that both girls had severe brain bleeds shortly after birth. It took my breath away, and I cried for a full day. All that the doctors could say about this devastating news was that we just had to give it time to see what damage it had caused. 

Abigail and Elizabeth were then transferred to Johns Hopkins to be followed by the Neuro team there. Abigail was transferred first, followed by Elizabeth two weeks later. I went back and forth between the two hospitals during those two weeks. It was a nightmare. 

During their 125 day NICU stay the girls suffered through numerous tests, labs, X-rays, MRI scans, ultrasounds, blood transfusions and even surgeries. They had to learn to breathe without being intubated, and they had to learn how to eat. Abigail came home with the assistance of oxygen and with a GTube. Elizabeth came home a few weeks later. My daughters had to fight to live, and they are amazing fighters. 
After four months in the NICU and three different hospital stays, I am happy to say the girls are now 15 months old and doing well. They love to look at books, play and dance. Each week, they receive physical and occupational therapy. They see numerous doctors and specialists, each for different reasons, but most importantly their doctors are pleased. There is no life like NICU life. It truly is a roller coaster. Every day you have no idea what is ahead of you. Your life stands still and time moves slowly.
I am thankful for all that the March of Dimes does for babies. My girls were so sick and small, and I know they are doing well today because of the amazing teams of doctors they had and because of the dedication and research funded by the March of Dimes.  
Why do I walk? I walk for my beautiful twin girls that were born at 26 weeks old and all the other babies born way too early. I also walk to support other parents of preemies, who know what it's like to ride on the horrific roller coaster that is the NICU.  

Tuesday, April 8, 2014

Abby and Brooke

Brett and I couldn't have been more excited when we learned we were finally expecting! It took us a while to even become pregnant, so when we found out we were having twins we were beside ourselves, jumping up and down happy. Our prayers were answered. Our fur-kid would have siblings! Our wonderful parents would be grandparents and these babies would have the best aunts and uncles! How lucky were we?! Lucky and scared beyond belief that we would be responsible for not one, but two tiny humans!

I had no idea that celebrating the "new year" would turn out to be such a nightmare. How is it that the best, most magical days of your life can equally be the unimaginable, incomprehensible, worst? My beautiful twin daughters' births were incredible. They made me a mom, something I've always dreamed about. I am a mom who didn't get to bring her babies home to the nursery in which they were supposed to be up all night. I am a mom who will live with missing pieces of her heart for the rest of her life, wondering who her children would have been.

In the evening on January 1, I just didn't feel right, so we called the doctor. When my water broke a couple hours after the call, we immediately headed for the hospital. I was in a panic and hysterical because deep down I knew the fate of this was not going to be the outcome I wanted, and so desperately desired. I had done everything right. I was just at the doctor three days ago, and had been seen every two weeks through my entire high-risk pregnancy. How could this be happening?

It was quite a roller coaster of emotions as my husband, family, and I realized I would not be leaving the hospital until the babies were delivered. We were all praying I could continue to keep the girls safe for a few more days, and best case, a few more weeks so I could get steroid shots to develop their lungs. I told myself miracles do happen, so this was my time for a miracle. I needed the miracle. I was closely monitored all day and had few contractions. They even let me order lunch because I was stable. This was a good sign. The glimmer of hope we all had was soon shattered. Everything changed about 3:30 pm.

Little did I know, our entire world was about to be blown to pieces. I delivered my baby girls at 20 weeks.

Our first daughter, Abigail Jean, was born about 8 pm January 2, 2014.

Abby had her thumb immediately up by her sweet little mouth, she looked just like my husband. Brooklyn Marie was born the next morning and let out a little cry as she entered this world. She was my mini-me. I had no idea that even at that little I could see perfectly, who resembled who. Abby weighed 9.7 ounces and Brooke weighed 9.4 ounces. The time we spent with both girls was amazing. We were happy parents. Even through the tears, I will never forget the overwhelming joy I had seeing Brett hold and love our girls. I had no idea how it would feel to hold our very own baby for the first, and what would be last time. As any parent knows, holding your newborn for the first time is something words cannot describe. Believe me, I tried and nothing sounded right, so I'll just leave it at magical. I believe in magic. Both Abby and Brooke were held in our arms and showered with love until their tiny hearts stopped beating. The girls were perfect.

Perfect fingers, toes, ears, arms, legs and button noses. These little angels just needed more time to grow.

I often think how in the world could this be our life. I feel robbed.

I feel like someone ripped out my heart. This "new normal" sucks. This unimaginable pain of losing a child is more than most people experience in a life time, and my husband, family, and I experienced it twice, in two days. I hate every second but the girls send me signs when they know I need them the most. The signs come in many forms, one of my favorites is when the girls paint the sky in the brightest and prettiest pink and purple that I've ever seen. Sunsets are my favorite because it signifies I've made it one more day without my girls. Each sunrise holds more promise and each sunset holds more peace.

Despite all of the sad feelings, I know that these two special little girls were meant to help us change the world and to help other babies have a fighting chance at life. The girls showed me that miracles and magic are indeed very real. They are our miracles. Abigail and Brooklyn knew nothing but unconditional love their entire lives! Not a day goes by that I don't think about both of them. I love my girls so much and miss them dearly. I am a mom, even though my daughters have angel wings. More importantly, I am so happy to be their mom. I am the proud twin mommy of Abby and Brooke and will be walking in the March for Babies.

"Eyes closed, we're gonna spin through the stars." -DMB

Wednesday, April 2, 2014

Why We Walk Wednesday: Rylan’s Rollers

This year, we welcome a new family team to the Maryland-National Capital Area. A Mom’s LIFE (Living in Faith Everyday) mommy group will join us in support of March for Babies in Prince William County on April 27. They will make the 4 mile walk in memory of Mason and in honor of Rylan -- twin boys born on September 24, 2013, almost three months premature.
Mason and Rylan’s mother, Michelle, suffered an infection that quickly took over her entire body. When one twin was exposed to the infection, both boys had to be delivered via emergency C-section. Weighing less than 3 pounds each and just over 15 inches long, Mason and Rylan were placed on ventilators and given blood pressure medications, antibiotics and multiple blood transfusions. Their mother could not hold or touch them as the tiny babies lay helpless in their incubators. Mason fought bleeding and other complications of the infection. 

After 10 days Michelle and Rylan said goodbye to their little fighter, and he is now their angel baby. Rylan was a trooper and came home after 54 days in the NICU. Rylan is now almost seven months old and thriving!

Michelle and Rylan feel forever in debt to the NICU nurses and neonatologists who were simply amazing. To give back, Michelle, her son Rylan and others will walk together as “Rylan’s Rollers” at March for Babies. They also planned the following fundraiser and hope to see you next Tuesday in Manassas.

Monday, March 31, 2014

Fundraising on Social Media!

Looking for resources to help with your March for Babies fundraising on social media? Check out our tips below!

Thursday, March 27, 2014

How to Make Your Fundraising Efforts Stand Out

Raising funds for the March of Dimes is a great way to support stronger, healthier babies AND it’s also a great opportunity to be creative! Here are some great ways to make your fundraising stand out and to get your friends and family excited about donating to your March for Babies efforts.

Ask in a special way – Make your letters and emails to potential donors personal in order to get a larger response. Do you send personal letters to your friends and family updating them on your life and career? Include your March for Babies efforts within your update.  If you are sending letters use colorful envelopes that are impossible to ignore.  Remember to share photos of your team and the reasons you are walking in your letters, emails and on your social networking sites (like Facebook and Twitter).

Share something sweet – Make cookies or other baked goods to thank your friends and family members. Go one step further and bring baked goods or candy to school or work (with permission) and sell them for donations.

Utilize special occasions – Is your birthday or another special occasion coming up? Ask your friends and family to donate as a gift this year. Having a celebration or a get-together? Provide an opportunity for attendees to donate to the March of Dimes right there as a thank you. Go the extra step and have a computer set up allowing people to make online donations right to your March for Babies individual or team page.

Offer rewards – Offer to drive your friends to school or work, carry your friend’s books to class, or clean out your friend’s locker in exchange for a donation to your March for Babies team.

Create competition – Challenge your friends and families to see who can get the most people to donate to your team’s page. Make the challenge public and you will see even greater success!

Say thank you – Thank those for donations in-person, by email/letter and/or through Facebook and Twitter. With administrative approval, publicly thank those who have donated at the beginning or end of a class or even make announcements to the entire school! The more public the thank-you, the better! Your donor can help you promote you walk!

Be creative and think outside the box! What works for some does not for others, and you and your friends and family may have a unique idea! Just be creative and have fun with it! Happy fundraising!

For more creative ways to raise funds, be sure to check out the 2014 March for Babies Youth Captains Guide!

Now let’s hear from you!
What is your best fundraising tip?
What creative ways do you raise funds for the March of Dimes?

Wednesday, March 26, 2014

Why We Walk Wednesday: Mallory's Marchers

Mallory's Marchers is this week's Why We Walk Wednesday team. On May 16, 2008 -- at 32 weeks gestation -- Mallory was born with the birth defect Spina Bifida. A few hours later, she required surgery to close the opening on her back and the implantation of her VP Shunt.  

She stayed at Johns Hopkins NICU for 26 days and needed a ventilator and morphine. Her parents were overjoyed to bring her home. 

Shortly afterwards, Mallory began to receive physical, occupational and speech therapy. 

Now five years old, Mallory is the 2014 March for Babies Ambassador for the Eastern Shore. The photo on the right is from a local March for Babies kickoff, where she wore a special "March for Babies Ambassador" hair accessory.

Mallory is a joy to be around with her positive, independent spirit. She puts a smile on everyone’s face as she maneuvers around in her pink wheelchair. 

We are thrilled to be able to share her smile with you!

Monday, March 24, 2014

Smoking in Pregnancy Confirmed As a Cause of Oral Cleft Birth Defects

March of Dimes Urges Women to Quit Before Pregnancy

WHITE PLAINS, N.Y., JAN. 17, 2014 A new report from the U.S. Surgeon General confirms that smoking during pregnancy causes babies to be born with cleft lip and cleft palate.
“We now have confirmation that smoking during pregnancy can damage the health of both mothers and babies. By quitting smoking before or during pregnancy, a woman will not only improve her own health; she may save her baby from being born too small and with a serious, disfiguring birth defect,” said Edward R. B. McCabe, MD, March of Dimes Chief Medical Officer. “Smoking during pregnancy exposes the baby to dangerous chemicals such as nicotine, carbon monoxide, and tar. These chemicals can reduce how much oxygen the baby gets, affecting the baby’s growth and development.”

“The Health Consequences of Smoking—50 Years of Progress,” was released by the Surgeon General today in honor of the landmark 1964 report that documented the death and disease caused by smoking.

The report also stated that each year about 1,000 infant deaths can be attributed to smoking. Of those, about 40 percent are classified as sudden infant death syndrome, the unexplained death of a baby under a year old while sleeping.

More than 7,000 babies are born in the U.S. each year born with an oral cleft birth defect and smoking increases the risk by 30 to 50 percent; this increased risk can be prevented by quitting smoking. About 23 percent of women smoke during pregnancy.

There are two types of oral cleft defects, a cleft lip, in which a baby's upper lip doesn’t form completely and has an opening in it; and a cleft palate, in which the roof of the mouth doesn’t form completely and has an opening in it. Both cause feeding problems, and may lead to ear infections, hearing problems, difficulty speaking, and dental problems.

In addition to oral cleft defects, smoking during pregnancy is known to contribute to preterm birth and stillbirth.

March of Dimes chapters nationwide fund quit smoking programs for women, and you can learn more from the chapter in your area. The March of Dimes also has information for women about quitting smoking on its website at: http://www.marchofdimes.com/pregnancy/smoking-during-pregnancy.aspxc

Tips to help quit include:
• Write down your reasons for quitting. Look at the list when you are tempted to smoke.
• Choose a "quit day." On that day, throw away all your cigarettes or cigars, lighters and ashtrays.
• Drink plenty of water.
• Keep your hands busy using a small stress ball or doing some needlework.
• Keep yourself occupied, too. Try going for a walk or doing chores to keep your mind off of cravings.
• Snack on some raw veggies or chew some sugarless gum to ease the need to have something in your mouth.
• Stay away from places, activities or people that make you feel like smoking.
• Ask your partner or a friend to help you quit.
• Ask your health care provider about quitting aids such as patches, gum, nasal spray and medications. Don't start using these without your health care provider's okay, especially if you're pregnant.

For more than 75 years, moms and babies have benefited from March of Dimes research, education, vaccines, and breakthroughs. Find out how you can help raise funds to prevent premature birth and birth defects by walking in March for Babies at marchforbabies.org. Find us on Facebook and follow us on Twitter. The 2014 March for Babies is sponsored nationally by the March of Dimes number one corporate supporter Kmart, Macy’s, Famous Footwear, Cigna, Sanofi Pasteur, Mission Pharmacal, United Airlines, and Actavis.
Elizabeth Lynch, (914) 997-4286, elynch@marchofdimes.com
Todd Dezen, (914) 997-4608, tdezen@marchofdimes.com