Family Team News

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Wednesday, May 28, 2014

Twitter chat on preeclampsia- how it affects you and your baby

Ever wonder why your provider takes your blood pressure and has you pee in a cup at every prenatal visit?  Ever heard of preeclampsia? It is a serious complication of pregnancy that can affect you and your baby. If you are worried about it or have had it, join us tomorrow for our pregnancy chat on Preeclampsia.  We are glad to partner with the Preeclampsia Foundation.
It’s on Twitter tomorrow, May 29th at 1pm ET.  Just follow # PreAM14. Jump into the conversation at any time to ask questions or tell us your experience. We hope to see you then!

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Wednesday, May 21, 2014

How Much Is A Hug Worth?

Last weekend I was exhausted.  It was one of those weekends where we had back to back plans from morning until night.  We had finally gotten home and I was sitting in my three year olds room waiting for him to go to sleep when he asked for a hug.  At that moment all I really wanted to do was tell him to go to sleep because honestly, getting out of the chair and leaning over his bed took more energy than I thought I had.  But I caved and bent down and let him wrap his strong little arms around my neck.  He squeezed so tight and then kissed me on the cheek and said, “I love you mommy” and then patted my back, rolled over and went to sleep. 

For that one minute, time seemed to stop and I sat there staring at him, kicking myself for almost missing that hug and realizing those fleeting moments of pure love should never ever be taken for granted.  I told myself, when the opportunity arose for hugs and sloppy kisses, I would always take them because not everyone can do what I had just done.  I’ll never get a hug from my youngest son, Bennett and it hurts so much to know that.  Bennett passed away just days after he was born.  We took all the time we could with him knowing we wouldn’t have long but it still didn’t seem like it was enough time to say goodbye and get in a lifetime of sweet kisses and squeezes.  My heart aches for parents who long for those hugs and kisses.
Just recently, a couple suddenly lost their three year old son in a tragic accident; I know they’ll always think back to the last time they told him they loved him, or kissed and hugged him.  Our time with our kids is so short and so unpredictable.  I’m determined to make the most of these moments; on behalf of the parents who never have the chance to have that first hug, or who have had to involuntarily give it up too soon, let’s just step away from the stresses of every day and appreciate LIFE.

I used to get frustrated when people would hear about the loss of our baby or the scares we’ve had with three year old and they’d tell me they were going to go straight home and “hug their kids”.  When did life get in the way of taking a moment or moments out of our day to just love on our kids for no reason at all?   I hope, instead, we as parents will pause in our busy lives and remember what’s really important to us.  For me, that reminder comes in the form of my preemie who singlehandedly has fought off life threatening illnesses more times than I can count on one hand and also my sweet angel Bennett and all the babies and children who are no longer with us and can’t give us hugs and kisses and last, but not least, my sensitive and absolutely perfect six year old who promises he’ll never leave us.  So my hope is that you’ll go home and hug your kids any chance you get no matter how tiring, busy or ordinary your day has been. We only get one chance at this life so let’s make it one to remember and smile back on; no regrets .
By Sara Raak

 

Monday, May 19, 2014

Avoiding and handling tantrums

A meltdown, a tantrum…whatever you call it, there is hardly a child who hasn’t had one. The AskUs team recently received a call from a woman who has a special needs child who “lost it” during a church service. Needless to say, the Mom felt embarrassed and the child later felt ashamed and upset. Since her son is older (age 8) than the age of kids who typically have tantrums, the church goers were not as accommodating about the tantrum as they might have been if it were a toddler. But, then again, this kind of behavior is common for this child, as it is related to his medical condition.

I don’t think I’ve ever met a Mom who was not bothered by the whines, cries, screams or inappropriate behavior of her child when he has lost control. Meltdowns in public are even more upsetting – when all the world witnesses your child as he is out of control. And it feels like children with special needs have more than their fair share of meltdowns.

What can you do to prevent a meltdown?

First, be sure that there is no medical reason for the meltdown. Check with your child’s doctor to see if a delay or specific health condition may be the root cause of the tantrum. For example, does your child have a speech or language delay that causes frustration in communication (which then leads to a tantrum for lack of being able to express himself)?  Are there medical or health issues that could trigger a tantrum due to anxiety, frustration or even pain? Speak with your child’s doc to get a better idea of what can set him off.

Know your child’s triggers – here are some common ones:

•    Changes in routine – especially sudden ones, and transitions between activities.

•    Hunger or low blood sugar – Most children need to eat some healthy food, especially protein, every 2 hours to prevent a drop in blood sugar.

•    Going to a place that triggers scary or bad memories – For example, some kids find going to a carnival or circus to be scary. If seeing a clown, balloons, face painting, or other scene provokes anxiety in your child, stay away or be prepared. Other kids with special needs are super sensitive to certain sounds, so noise makers, sirens, or other noises may be overwhelming.

The more you know the triggers for a meltdown, the better you will be at preventing one or minimizing it once it starts.

What else can you do?

•    Know your child’s limits – If one hour out in a public place is about all your child can handle without needing to re-charge his batteries, then try not to push that limit.

•    Act quickly to stop a meltdown before it escalates. Carry your child’s self-soothing items, (food, a blanket, a favorite stuffed animal) to help calm the storm before it starts or gets out of control. Sometimes diverting attention is enough to prevent the approaching storm from raging.

•    The American Academy of Pediatrics (AAP) has more info on understanding, preventing and handling tantrums.

What helps your child avoid meltdowns? What do you do to minimize them? Please share your thoughts so parents can learn from each other.

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. While on News Moms Need and click on “Help for your child” in 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.


 

Monday, May 12, 2014

March of Dimes Awards $250,000 Prize to Scientist Who Discovered Genetic Mutations Responsible For Autism Spectrum Disorders

Vancouver, British Columbia, Monday, April 21, 2014

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A pediatric neurologist whose breakthrough research identified genetic mutations that cause Rett syndrome and many other neurological disorders will receive the 2014 March of Dimes Prize in Developmental Biology.

Huda Y. Zoghbi, M.D., director of the Jan and Dan Duncan Neurological Institute at Texas Children’s Hospital, an investigator with the Howard Hughes Medical Institute, and a professor in the departments of Pediatrics, Molecular and Human Genetics, Neurology and Neuroscience at Baylor College of Medicine, discovered that mutations of the X-linked gene MECP2 cause Rett syndrome. She also learned that the protein, MeCP2, influences the expression of thousands of other genes, and variations in the protein’s levels can result in a range of disorders, including autism and early-onset schizophrenia.

Rett syndrome is one of the most common causes of intellectual disability in girls. Symptoms typically appear between the ages of 6 and 18 months. Affected children withdraw socially and often cry endlessly. They compulsively wring their hands and lose language skills and motor coordination, as well as the ability to consciously control their movements. Chewing, swallowing, and even breathing can be a problem. Tremors are common and some children have seizures.

“Dr. Zoghbi’s contributions to our understanding of several entirely different neurological disorders, including her finding of the genetic basis of Rett syndrome, have opened new areas of research,” says Joe Leigh Simpson, MD, senior vice president for Research and Global Programs at the March of Dimes. “Her work influences the entire field of autism and other neuropsychiatric disorders.”

Dr. Zoghbi left Lebanon in 1976 during that country’s civil war. She transferred from the American University of Beirut to Meharry Medical College in Tennessee. Dr. Zoghbi trained in pediatrics, neurology, and molecular genetics at Baylor College of Medicine, joined the faculty, and has remained there for more than three decades. She was the first woman from Baylor to be elected into the Institute of Medicine and the National Academy of Sciences. She has earned dozens of honors and awards, most recently the Gruber Prize in Neuroscience and the Pearl Meister Greengard Prize.

Dr. Zoghbi will deliver the 19th annual March of Dimes Lecture titled: “Rett Syndrome and MECP2 Disorders: From the Clinic to Genes and Neurobiology” at the Vancouver Convention Centre during the Pediatric Academy Societies annual meeting. She will receive the March of Dimes Prize in Developmental Biology at a gala black-tie dinner and ceremony at the Fairmont Pacific Rim Hotel, in Vancouver. CBS sportscaster Greg Gumbel, member of the March of Dimes national Honorary Board of Trustees, is expected to host the award ceremony.

Individuals who receive the March of Dimes Prize are leaders in the field of developmental biology. Their pioneering research offers hope for the prevention and treatment of some of the most serious birth defects and other diseases.

The March of Dimes Prize in Developmental Biology has been awarded annually since 1996 to investigators whose research has profoundly advanced the science that underlies the understanding of birth defects. The March of Dimes Foundation created the Prize as a tribute to Dr. Jonas Salk shortly before his death in 1995. Dr. Salk received Foundation support for his work on the safe and effective polio vaccine. The prize is a cash award of $250,000 and a silver medal in the design of the Roosevelt dime, honoring President Franklin D. Roosevelt, March of Dimes founder. In its 19-year history, the prize has been the crowning glory of a distinguished research career or a stepping stone on the path toward future honors for researchers.

About March of Dimes

The March of Dimes Foundation is the leading nonprofit organization for pregnancy and baby health. For more than 75 years, moms and babies have benefited from March of Dimes research, education, vaccines, and breakthroughs.

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, May 7, 2014

Time for sunshine and flowers… and bugs

Pesticides are chemicals used to kill or keep away insects and rodents. You can use some pesticides in your home. Others are for use only outside or on crops. With the warmer weather finally upon us, we get to enjoy flowers blooming, grass growing, and all those pests that also enjoy the springtime weather. So is it a good idea to use pesticides to get rid of these critters?

In her book, Healthy Mom, Healthy Baby, Dr. Siobhan Dolan states that “We don’t know for sure what effect pesticides have on an unborn baby. In some studies, high-level exposure appears to increase risk of miscarriage, premature birth, low birthweight, birth defects, and learning problems. Although pesticide use is regulated by the federal government, there is a lack of agreement over pesticides’ safety.”

If you are pregnant, it makes sense to avoid pesticides whenever possible.

If you need pest or rodent control in your home:
• Try to use traps, like mousetraps,  instead of pesticides. Be careful not to set traps in places where children can get to them. Stay away from rodents and have someone else empty the trap.
• Have someone else put the pesticide in your home. Ask them to follow the directions on the product label.
• Put food, dishes and utensils away before using the pesticide.
• If you need to use it, have someone open the windows to air out your home and wash off all surfaces where food is made after using the pesticide

If you use pesticides outside your home:
• Close all the windows and turn off the air conditioning. This helps keep pesticides in the air from coming into the home.
• Wear rubber gloves when gardening to avoid touching pesticides.
• And as tempting as it might be, try to avoid walking barefoot in the grass.

In certain areas, you may need to consider using an insect repellant. Insect repellants are products you put on your skin or clothes to help keep insects, like mosquitoes and ticks, away. This helps prevent insect bites.

Many insect repellants contain DEET (diethyltoluamide).  According to Dr. Dolan, “Recommendations from the U.S. Centers for Disease Control don’t tell pregnant women to avoid DEET. But it’s reasonable to stay away from it if you possibly can, unless you’re in a situation in which using it makes more sense than not using it. For example, if you’re camping in an area that’s crawling with ticks or buzzing with mosquitoes, applying insect repellent makes a lot of sense. In that situation, the risk of getting Lyme disease or West Nile virus, which can be harmful to you and your baby, outweighs any theoretical risk that might be posed by the insect repellent.”

You also can prevent bites by staying indoors in the early morning or late afternoon when mosquitoes are most likely to bite. Wearing long pants and long sleeves when going outdoors helps, too.

Monday, May 5, 2014

Could Aspirin help prevent preeclampsia in some women?

 

Could Aspirin help prevent preeclampsia in some women? That’s what a panel of experts from the U.S. Preventive Services Task Force is suggesting in this month’s Annals of Internal Medicine. The panel reviewed research and evidence and found that low doses of Aspirin may help prevent preeclampsia in women who are at risk of developing the condition.
Preeclampsia is condition that happens when a pregnant woman has both high blood pressure and protein in her urine. With early and regular prenatal care, most women with preeclampsia can have healthy babies, but it can cause severe problems for moms. Without treatment, preeclampsia can cause kidney, liver and brain damage. It also may affect how the blood clots and cause serious bleeding problems.
No one knows what causes preeclampsia. But some women may be more likely than others to have preeclampsia. Some risks include:
• Having your first baby
• Having preeclampsia in a previous pregnancy
• Having a family history of preeclampsia
• Being pregnant with multiples (twins, triplets or more)
• Being older than 35
• Being overweight or obese
If you’re pregnant and at risk for preeclampsia, talk to your health provider. While the research may be promising, more needs to be done. In the meantime, don’t take any medicine during pregnancy without checking with your health provider first. Learn more about preeclampsia.
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Sunday, May 4, 2014

Why We Walk: The Heard Family

Our journey as a family started with a healthy pregnancy. After having Luke, we unfortunately miscarried but tried again. Then, we learned we were having identical twin boys. With uncontrollable joy, I started buying two of everything.

At 24 weeks, the bigger twin, Cody’s heart stopped. Then, I learned the babies had Twin-to-Twin Transfusion Syndrome. So, I had an emergency C-section. Our twins were born; Cody weighing 1.6lbs, and Dalton weighing 1.2lbs; and they were whisked off to the NICU. We spent countless hours at their bedside with them praying, singing, and talking to them. After three long days, we got the call to say goodbye to Dalton. This was the longest walk of my life. We held him for what felt like hours, kissed his fragile lips and said goodbye.

We visited Cody in the NICU every day for 143 days. After many ups and downs, we finally brought him home with oxygen support. While we celebrated every single joy we had in our life, our oldest son, Luke and our surviving twin, Cody - we were numb with pain. 

The March of Dimes helped us in various ways throughout this journey. During our NICU stay, the NICU Family Support Specialist, Sara, walked by me to ask how I was or if I needed anything. We participate in March for Babies to honor our journey.


Saturday, May 3, 2014

Why We Walk: Team MCubed


The Roloff Triplets were born at 29 weeks, 6 days gestation weighing:


  • Makenna Ashten - 3lbs1oz
  • Morgan Brooke - 2lbs 2oz
  • Maci Camden - 2lbs 6oz

On Tuesday March 5, 2013, showing no signs of pre-term labor, Makenna’s sac broke on our way to our sonogram appointment at UMMC at 29 weeks, 3 days. I went into active labor Thursday evening. Our daughters were born via emergency C-section at 2:30 a.m., 2:31 a.m. and 2:33 a.m. on Friday, March 8, 2013. So began their NICU journey. Maci (Baby C) was able to come after 49 days, Makenna (Baby A) followed after at 63 days (both before their original due date of May 18) and finally Morgan (Baby B) joined her sisters after 74 days in the NICU!

They are all very happy and healthy 13-month-olds with the biggest personalities we have ever seen. They make every day worth waking up for and make you realize what is important in life and truly make life worth living. 

We were blessed with triple the hugs and kisses, triple the love, triple the laughter and triple the miracles!




Friday, May 2, 2014

Why We Walk: Caleb Michael

Team Love for Caleb Michael will walk in Sunday's March for Babies in Southern Maryland. We walk to honor Caleb Michael White! Without the March of Dimes support I wouldn't have known what to do after losing Caleb. Thanks to the resources and members of this organization I can honor him every year while helping others!


Thursday, May 1, 2014

Why We Walk: Team Jesse James

Jesse Bonham lives in Central Maryland with his parents Amber and JD, older sister Katie and younger brother Tyler. On February 12, 2014, he was born at 29 weeks and weighed 3 pounds 1 ounce. Jesse spent 9 weeks in the NICU. Mom Amber says, “After delivering a full-term baby girl, we never imagined anything could go wrong.” 

Jesse was a healthy preemie, scoring a 9 on the Apgar test. He didn't require immediate oxygen according to Amber. He was on a nasal cannula for 7 weeks, required a blood transfusion at 3 weeks and had some feeding issues. He came home on a heart monitor to track his apnea and bradycardias
He began therapy immediately and was diagnosed with cerebral palsy in July 2008. 

Jesse began talking at age 2.5-years-old and was finally able to walk unassisted in October 2009! Jesse is now a thriving 7-year-old with the biggest heart and appreciation for everyone and everything that surrounds him.