Spirited Sister Painting for Healthier Babies

Pregnancy in women with congenital heart disease

Most women who have congenital heart disease and decide to get pregnant will have a safe pregnancy with minimal risks. However, there are many factors that may need to be considered. During pregnancy, your heart has much more work to do. It has to beat faster and pump more blood to both the mother and the baby. If you are a woman who has congenital heart disease, then this extra stress on your heart may be a concern. Considering these issues before pregnancy and being prepared for potential complications can help you feel more confident and more in control throughout your pregnancy.

Preconception planning
The most important thing you can do if you are a woman with congenital heart disease is to talk to both your cardiologist and obstetrician before you get pregnant. This will allow you to understand what risks (if any) are involved for your pregnancy. You can also determine if there are any concerns with your heart that need to be fixed prior to pregnancy—for instance, do you need to alter any medications or have any surgical repairs? Doing all of this before pregnancy will allow you to make sure your heart and your overall health is ready for pregnancy.

Some medications carry a risk for birth defects. These include ACE inhibitors and blood thinners. Therefore, if you are taking these medications and want to have a baby, it is important to talk to your doctor about their safety and potential alternatives that may work for you. However, you should never stop taking any medications without your doctor’s approval.

You may also want to meet with a genetic counselor to review the risks of passing congenital heart disease on to your baby. This risk will vary depending on the cause of the heart disease.

Pregnancy
During pregnancy you and your doctors will want to minimize any risks for both you and your baby. You will need to have regular follow-ups with both your obstetrician and cardiologist. It is important that your doctors work together and coordinate your care. Some women will need to be followed by a maternal-fetal medicine specialist (an obstetrician who manages high-risk pregnancies).

Although most women with congenital heart disease have safe pregnancies, symptoms of heart disease can increase, especially during the second and third trimesters when the heart is working much harder. This may mean additional visits to both your cardiologist and obstetrician.

Typically if you have a personal or a family history of congenital heart disease, your obstetrician will offer you a fetal echocardiogram at around 18-20 weeks of pregnancy. This is a specialized ultrasound that allows your doctor to check out the anatomy of your baby’s heart and look for major structural changes. Not all heart defects can be identified through fetal echo though.

Delivery
It may surprise you to learn that most women with congenital heart disease can have a normal vaginal delivery. You and your doctor will want to discuss pain management options and have a plan in place. You may need additional monitoring both during and after delivery. This can include oxygen monitoring as well as EKGs (electrocardiogram—a test that checks for problems with the electrical activity of your heart).

If you have congenital heart disease work with both your obstetrician and cardiologist so that you can have the best outcome possible. As with most chronic medical conditions, planning for your pregnancy will allow you to make informed decisions about what is best for you and your baby.

 

Tags: CHD, congenital heart disease, preconception care, prenatal care, women with CHD

Harford County 2014 Family Team Kickoff

Kami's story

I was 30 weeks pregnant when my water broke at 3 am. The doctor told us to get to the hospital quickly... shortly after getting there, they flew me to UMMC (University of Maryland Medical Center in Baltimore) where I was placed on strict bed rest with my best friend/hubby by my side for 5 days. On March 10, Kamryn was in distress and decided to make her arrival through emergency C-section...

At just a few weeks old, we found out about her PVL (Periventricular leukomalacia)... Scared to death, we didn't really know what to expect but we knew this was God's plan and with our amazing group of family and friends, we would get through this together and everything would be ok! After being in the NICU at UMMC (almost 2 hours from our home) for the longest 2 months ever, Kami was able to come home.

At just a few months old, Kami was diagnosed with CVI (Cortical visual impairment) and quadriplegic spastic high and low tone CP (cerebral palsy), at just 9 months old, she had a very severe seizure that almost took her life. She was intubated and on a breathing machine for 3 days... This is when she was diagnosed with epilepsy. At 14 months old, she had surgery to put at G-tube in, this was because she was very underweight and aspirated when she swallowed - all the food/liquids were going into her lungs. She has recently been diagnosed with asthma and has had a lot of breathing issues. She has had one eye surgery with more expected.

Kami is now almost 3 years old on March 10, 2015 - she does not crawl, walk or talk, she has PT, OT and breathing treatments every day, continues to struggle with seizures and everyday issues - but has a smile that would light up a room and is a very happy beautiful baby girl." If it wasn't for the help of others, we don't know where we would be and we are so grateful for all our blessings!!!

2015 March for Babies Family Team Tee shirts

https://www.marchforbabies.org/march/files/family-team-shirts.pdf

Share Your Why We Walk Story

We want to hear from you! Every Wednesday leading up to March for Babies, we will post a story from one of our walkers on this blog as well as MD-NCA Facebook and Twitter accounts.  

We are asking volunteers to provide a quote and picture(s).

Please fill out the following and send photos (a newborn and recent photo – it can be from a March for Babies) to Heather Kane at hkane@marchofdimes.org for consideration.

First and Last Name

Email

Team Name:  

Walk site: 

 Story/Quote (200-350 words about your journey and why you March for Babies): 

Does your baby have the right car seat?

Finding the right car seat can be a challenge. There are so many different kinds and sizes, how do you know which car seat is right for your child’s age and weight? What should you do if you have a baby born prematurely? This guide can help:

Step 1: Find the right car seat

• Should you get a rear facing car seat? Forward facing? Booster seat? Click here to learn the kind you need as your child grows. This handy visual guide is also helpful; just click on each box for details.
• Next, find a car seat based on your child’s height and weight.
• Car seats are also rated on ease of use. This info may be helpful to narrow down the kind of seat to buy.

Step 2: Correctly install your car seat

A car seat that is not installed correctly can be hazardous to your child.

• Learn proper car seat installation based on the kind of seat you have.
• Click here to learn about the inch test and pinch test – two simple ways to see if the seat is installed properly.
• And, did you know child seat safety inspectors can check your child’s car seat to make sure it is safely installed? (I didn’t!) Check it out.

Step 3: Register your car seat

• You can receive updates and notices about possible recalls by registering your car seat. Here’s how.

Preemies and tiny babies

If you have a premature or low birth weight baby, take time to read these special recommendations and our blog post on tips for tiny babies.

The right car seat, installed and used correctly is a MUST to keep your child safe.

Tags: car seat, car seat installation, car seat safety, preemie car seat, prematurity, tiny baby

Meet the 2015 March for Babies National Ambassadors

Elise Jackson of Chicago was healthy and doing everything right when her water broke halfway through her pregnancy. After 5 weeks of bed rest in the hospital and careful monitoring, she and her husband, Todd, welcomed Elijah into the world on 5/8/02 at 25 weeks.

He weighed just over a pound and was 11 inches long, which is the length of a sheet of paper. Everything happened so suddenly, explains Elise, that “There wasn’t time for me to take in the magnitude of the situation — the birth of my only child, the fact that he arrived months earlier than expected and the incredibly long journey ahead for our family.”

Elijah spent 7 months in a newborn intensive care unit where he had heart surgery and received treatment for respiratory and digestive problems, anemia and jaundice. When his happy parents finally took him home, he continued to be monitored with a feeding tube, respiratory support and a trach in his throat to help him breathe easier. Elijah’s medical bills totaled more than $1.2 million.

Today, at 12, Elijah is a student and basketball fan. As he continues to overcome challenges, he inspires others, especially his parents. Elise, a March of Dimes volunteer for 10 years, rallies her colleagues at United year round, while Todd, a member of March of Dimes national service partner Phi Beta Sigma, Inc., also helps lead the local March for Babies® walks and their family team. As the 2015 National Ambassador, Elijah and his parents will travel the country to share his story and raise awareness of premature birth.

See Elijah’s story here

How can we prevent birth defects?

Birth defects are common, costly, and critical.
Common: Every 4 ½ minutes in the United States, a baby is born with a birth defect.
Costly: Hospital costs for children and adults with birth defects exceeds $2.6 billion. That does not include outpatient expenses.
Critical: Birth defects cause 1 in every 5 deaths during the first year of life. They can result in lifelong challenges and disabilities.

As Birth Defects Prevention Month draws to a close, let’s recap what we know and look at steps that can be taken to prevent them.

Preconception and pregnancy planning
We know that it essential for a woman to take an active role in planning her pregnancy.  If you are thinking of having a baby or if you may want to have children sometime in the future, it is important to make a PACT: plan ahead, avoid harmful substances, choose a healthy lifestyle, and talk to your doctor. You can read more here.

Changing a few behaviors now can make a big difference when you are ready to have a baby. It is best to get any preexisting medical conditions, such as diabetes and high blood pressure, under control before pregnancy. Some medications, such as opioid-based prescription pain medications, are not safe to use when you are pregnant. All of these concerns can be discussed with your doctor during a preconception checkup.

Folic acid fortification
It is well known that taking 400 micrograms of folic acid every day can help to reduce the risk of neural tube defects or NTDs (disorders of the brain and spine). Since the US mandated folic acid fortification of enriched cereal grain products in 1998, the rates of NTDs have decreased by 35%.  That means that there are 1,300 fewer NTDs each year as a result of fortification. And that translates into an annual cost savings of approximately $508 million.

Surveillance
State surveillance systems record the number of babies born with a birth defect each year. The information gained from these surveillance systems furthers research on the causes of birth defects. The data also helps researchers to better understand which populations are at highest risk for specific birth defects. This information can then be used by public health professionals, policymakers, and health care providers to implement prevention strategies.

Research
The March of Dimes is funding research to understand the causes of birth defects and to develop new ways to prevent and treat them. Some March of Dimes grantees are studying basic biological processes of development. A more advanced look at the process of development will help reveal what can go wrong along the way. Others researchers are conducting clinical studies aimed at finding ways to prevent or treat specific birth defects.

Birth Defects Prevention Month may be coming to an end, but there is still a lot of work to do. Go to the National Birth Defects Prevention Network to learn more.

Tags: birth defect, Birth Defects Prevention Month, folic acid, National Birth Defects Prevention Network, neural tube defects, opioids, preconception checkup, prevention, research, surveillance