Family Team News

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Wednesday, May 29, 2013

Pregnant at 46

Most of us have heard that Halle Berry is pregnant at the age of 46. Wow, you go girl! And did you see the recent episode of Call the Midwife where a first-time pregnant woman (a twin) in her 40s gave birth to twins of her own? Some women are asking us “If they can, why can’t I?” Good question, complicated answer.

Women over age 35 may be less fertile than younger women because they tend to ovulate (release an egg from the ovaries) less frequently. Certain health conditions that are more common in this age group also may interfere with conception. These include endometriosis, blocked fallopian tubes and fibroids.

If you are over 35 and haven’t conceived after 6 months of trying, make an appointment to see your health care provider. Studies suggest that about one-third of women between 35 and 39 and about half of those over age 40 have fertility problems. At age 47, most babies are conceived with some form of fertility treatment. This can be time consuming and expensive and there is no guarantee the treatment will work.

Most miscarriages occur in the first trimester for women of all ages, but the risk of miscarriage increases with age. Studies suggest that about 10 percent of recognized pregnancies for women in their 20s end in miscarriage. The risk rises to about 35 percent at ages 40 to 44 and more than 50 percent by age 45. The age-related increased risk of miscarriage is caused, at least in part, by increases in chromosomal abnormalities.

The good news is that women in their late 30s and 40s are very likely to have a healthy baby. However, they may face more complications along the way than younger women. Some complications that are more common in women over 35 include: gestational diabetes, high blood pressure, placental problems, premature birth, stillbirth. About 47% of women over age 40 give birth via cesarean section. You can see why it’s so important to keep all appointments with your health care provider.

All these things taken into consideration, many women who do conceive in their late 40s, either on their own (unlikely but not impossible) or with some fertility treatment, do manage to have healthy babies. The important thing to remember is to have a preconception checkup and early and regular prenatal care. Know the signs of preterm labor, and give your doc or midwife a call whenever you have a question or concern.

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Friday, May 24, 2013

Keeping track of your child’s records

Whether your child has a medical condition, disability, receives services through the Early Intervention Program or Special Education, one of the best things you can do is to keep all of your child’s records well organized.

Why is this so important?
If your child is in the early intervention program for babies and toddlers or if he is receiving services through your local school system, you will find that you will amass an enormous amount of paperwork. Keeping it organized will help you tremendously when you need to find documents for IFSP or IEP meetings, visits with other doctors or specialists, and if you need to apply for other programs or services. It is very important that you keep all evaluations and test results so that future specialists can see the history of your child when he evaluates him. Having orderly records will also help you if you need to speak with an attorney in an attempt to try to obtain services you feel your child should rightfully receive.

How should you get organized?
My favorite way to do this is to get an old fashioned three ring binder and put each item in it in chronological order (date order). Put the oldest one on top and the newest one at the bottom (so it reads like a book). You are going to need more than one binder as your child grows, and each one can be labeled a different year (2013, 2014, etc.). This binder method will allow you or your child’s doctors to review your child’s history in a beginning-to-end format. It will also give you a “big picture” of your child, and help you put the details of all the different moving parts into one coherent whole.

What should you put in the binder?
Put everything that is related to your child’s health, disability and education in the binder. This would include:
• Medical records – beginning with your child’s birth (and even your pregnancy if it is applicable or if you have it)
• All evaluation reports
• Your child’s ISFPs and/or IEPs
• Report cards
• Educational test results (such as standardized tests)
• Your notes from meetings or phone calls with school personnel, doctors, or other individuals, with dates
• Notes from your child’s teacher
• Samples of your child’s work
• The business cards of all of your child’s doctors. You can either put them in plastic business card holders, or create a master list of all the doctors with their contact info.
• CDs or thumb drives of electronic information that is on your computer (always back up files!)
• A list of all the medications your child is taking, with the dosage, frequency and prescribing doctor.
Some experts say that it is also helpful to create a one page summary sheet, which is almost like a table of contents. It should list each document, the date the document was created or received, and a brief description of what it is (eg. “John’s neurological evaluation, 2009,” “IEP for 5th grade,” “notes from team meeting on January 12, 2011,” etc.). This will help you to locate valuable information when you need it quickly (such as right before a meeting or a visit to a new doctor). The more organized you are, the easier it will be to manage your child’s journey.
Some people don’t like the binder method. If you find this does not work for you, then you might find it easier to put all of the above items in a file cabinet (in file folders) in chronological order. Whichever method you choose, just be consistent and label your folders so that you can find things when you need them.

When should you stop keeping these files and records?
Besides needing these records for early intervention or school based services, you may need these records for the high school years and beyond graduation. For example, you may need these records in order for your child to qualify for accommodations for college based entrance exams, such as the SAT or ACT. You will also need these records to support a request for testing accommodations at college. Lastly, many of these records will be required to apply for government benefits, such as Supplemental Security Income (SSI). So, I suggest that you keep your file system going for as long as your child (or later as an adult) has special needs.

Where can you get more help with this?
I often recommend that parents go to the NICHCY website as they have a Sample Record-Keeping Worksheet as well as a description of all of the various kinds of info that you should include in your binder on page 15.
In addition to NICHCY, you can also go to Wrightslaw, an extensive website dedicated to helping parents navigate the maze of special education. They offer concrete advice on how to advocate for your child with special needs. They also have great articles on how to organize your child’s records.

Bottom line
If you begin your record keeping early, you will not be overwhelmed by the avalanche of papers that will undoubtedly come your way. But, if you did not have a method of record keeping before today, don’t worry. Simply start with today and you can go back and organize prior paperwork another time. Being organized will cut down on the stress that occurs when you feel like you are buried beneath a mountain of paper. You have enough to tend to with your child – it is helpful if the paperwork does not get in your way but rather helps you achieve your goals. Of course, the best part of all is that you will feel more confident and in control of your journey.

Let me know if this helps or if you have other suggestions. What has worked for you?
Have questions? Send them to AskUs@marchofdimes.com.

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Summer Programs for Kids with Special Needs

Summer is just around the corner. If your child has an IFSP or an IEP and is receiving services for a developmental delay or a qualifying disability, it may be possible for services to continue throughout the summer months. This is called Extended School Year services or ESY.
 
ESY may include continued special education services or related services. It is sometimes possible for a child who does not have an IEP but rather a 504 plan to receive ESY, which is based on your child’s individual needs and your state's/district's regulations.
 
Read more in our News Moms Need blog.

Monday, May 13, 2013

Drive for Charity

The 8th Annual Dulles Greenway Drive for Charity will take place Thursday, May 16, 2013. During this day, all proceeds from collected tolls will be donated to the March of Dimes NICU Family Support Project at Inova Fairfax Hospital for Children, the Dulles Greenway Scholarship program and four other local nonprofits.

Last year, the Dulles Greenway proudly contributed a record $260,000! In total, the Dulles Greenway has donated more than $1.5 million to nonprofits, including the March of Dimes, since the program began. So, tell others that driving the Greenway Thursday is worth the drive… for charity.

For more information, please visit www.dullesgreenway.com/drive-for-charity, watch the youtube video and follow them on Twitter @DriveforCharity

Wednesday, May 8, 2013

Imbornto

Every baby is born to do something great. Whether that’s dance, create or explore. But first they deserve to be born strong and healthy. That’s where the March of Dimes plays a vital role.

This year between Mother’s Day and Father’s Day, join the March of Dimes by participating in its Imbornto campaign by shopping, dining or making a donating where you see our logo. Information about the companies supporting the campaign can be found on the Partners' page. Check out our video about Imbornto. Additionally, donations can be made here. With your help, we can continue the developments and research that help all babies achieve what they were born to do.

And, don’t forget to treat mom to a special Mother’s day breakfast.  Visit Imbornto special feature page for delicious recipes from Martha Stewart Living.

Monday, May 6, 2013

A fellowship and a double helix



In 1952, James Watson was an unknown scientist who applied to the March of Dimes for a fellowship proposing research on X-ray diffraction patterns of proteins and nucleic acids. Knowing that the March of Dimes funded basic science as well as polio prevention, Watson hoped that the grant he would receive might enable him to conduct a year of research and cover his lab expenses. His modest grant award of $5,678, roughly equivalent to $50,000 today, led to one of the most momentous discoveries of the age. On April 25, 1953 Watson and his colleague Francis Crick published “A Structure for Deoxyribose Nucleic Acid” in the journal Nature. The field of molecular genetics was launched. They had discovered the double-helical structure of DNA.
Much has been written about Watson and Crick’s famous discovery, for which they received the Nobel Prize in 1962. Their path-breaking research vastly expanded the field of genetics, leading to knowledge unimaginable in their day. Their accomplishment also prefigured what the March of Dimes would do next. After funding the vaccines that brought the scourge of polio to a halt, the Foundation turned to the riddle of birth defects, knowing that the keys of genetics would open further doors to this intractable problem.

By the 1960s, the March of Dimes sponsored birth defects and clinical genetics conferences to keep medical professionals up-to-date with progress in the field. We helped to develop a universal standardized language (the karyotype) to describe human chromosomes. At a March of Dimes conference in 1969, Dr. Victor McKusick proposed that science might create a molecular map of all genes. His idea sparked the March of Dimes to organize a series of human gene mapping workshops that ultimately led to the Human Genome Project of the 1990s.

Our interest in genetics goes beyond science itself to assisting individuals and families. We have developed the field of genetic counseling to help parents and parents-to-be understand the risks of inherited disorders. We helped to establish the first master’s degree program in genetic counseling at a U.S. college. In the 1980s we sponsored an educational program on Genetic Decision Making and Pastoral Care, enabling clergy from different religions to understand the complexities of genetics in order to give appropriate counseling to concerned families. At the same time, our funding of scientific research has remained fundamental. Our grantees have identified the gene for Fragile X Syndrome and have created therapies for other life-threatening disorders.

As we note the 60th anniversary of Watson and Crick’s famous article on the double helix of DNA, we look forward to a time when birth defects and premature birth have receded into the past just as polio has done. Our steadfast commitment to “stronger, healthier babies” is grounded in the building blocks of genetics that help us identify the causes of disease.

Thursday, May 2, 2013

Did Somebody Say Yogurt?

This Saturday (5/4), Menchie's Frozen Yogurt in Rockville, MD is donating a portion of their sales to the March of Dimes. Just present the flyer below at checkout either by smartphone or a hard copy and enjoy your treat while helping babies. Why not splurge -- after all you walked a few miles at March for Babies!

Wednesday, May 1, 2013

Study shows we can reduce unnecessary early deliveries

A study published today in Obstetrics & Gynecology shows that hospital-based quality improvement programs across many states can be remarkably effective at reducing early elective deliveries of babies.

The rate of elective early term deliveries (i.e., inductions of labor and Cesarean sections without a medical reason) in a group of 25 participating hospitals fell significantly from 27.8 percent to 4.8 percent during the one-year project period, an 83 percent decline.
The March of Dimes, which partly funded the study, calls the findings good news, because babies delivered before full-term are at increased risk of serious health problems and death in their first year of life.
“This quality improvement program demonstrates that we can create a change in medical culture to prevent unneeded early deliveries and give many more babies a healthy start in life,” says Bryan T. Oshiro, MD, of Loma Linda University School of Medicine and lead author of the study.
“Reducing unnecessary early deliveries to less than five percent in these hospitals means that more babies stayed in the womb longer, which is so important for their growth and development,” says Edward R.B. McCabe, MD, medical director of the March of Dimes. “This project saw a decrease in the proportion of babies born at 37 and 38 weeks and a corresponding increase in the 39-41 week range during the one-year period studied. Additional studies, perhaps over a longer period of time, could clarify whether such quality improvement programs can also bring down a hospital’s overall preterm birth rate.”
This was the first project of a collaborative with perinatal quality improvement advocates from state health departments, academic health centers, public and private hospitals, and March of Dimes chapters from the five most populous states in the country: California, Florida, Illinois, New York, and Texas. These five states account for an estimated 38 percent of all births in the United States.
The March of Dimes urges hospitals, health care providers, and patients to follow the American College of Obstetricians and Gynecologists guidelines that if a pregnancy is healthy, to wait for labor to begin on its own. The final weeks of pregnancy are crucial to a baby’s health because many vital organs, including the brain and lungs, are still developing.
“A Multistate Quality Improvement Program to Decrease Elective Deliveries Before 39 Weeks,” by Dr. Oshiro and others, appears in the April 8 online edition of Obstetrics & Gynecology, Vol. 121, No. 5, May 2013.
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