Critical congenital heart disease, CCHD

Critical congenital heart disease (also called CCHD) is a group of the seven most severe heart defects present at birth. They may affect the shape of a baby’s heart, the way it works, or both. Babies with CCHD need treatment within the first few hours, days or months of life. Without treatment, CCHD can be deadly.

About 4,800 babies in the U.S. each year are born with CCHD. These seven heart defects are part of CCHD: Hypoplastic left heart syndrome (HLHS); Pulmonary atresia (PA); Tetralogy of Fallot (TOF); Total anomalous pulmonary venous return (TAPV, or TAPVR); Transposition of the great arteries (TGA); Tricuspid atresia (TA); Truncus arteriosus.
February 7-14 is Congenital Heart Defects (CHD) Awareness Week. The March of Dimes is working to help identify and understand these defects through research. We also are advocating Congress to reauthorize the Newborn Screening Saves Lives Act. To learn more about these CCHDs, several other types of congenital heart defects, possible causes and risk factors, and treatment options, read our article at this link.
Tags: CCHD, critical congenital heart disease, heart defects, hypoplastic left heart sundrome, newborn screening, pulmonary atresia, pulse ox, tetralogy of fallot, total anomalous pulmonary venous return, transposition of the great arteries, tricuspid atresia, truncus arteriosis

Why We Walk Wednesday: Team Two Tiny Blessings

Isabella and Addisyn Pennel were born at 26 weeks 2 days gestation on 4/16/10.  Isabella was 2.2 lbs and 14”.  Addisyn was 2 lbs and 13.75”.  Due to multiple complications, Isabella passed away on 4/25/10.  Addisyn remained in the NICU/Intermediate Care for 82 days.

When we found out we were expecting again, we were excited, and shocked when we found out it would be identical twins.  However, excitement turned to fear when at 19 weeks gestation, we were told that they had TTTS (Twin to Twin Transfusion Syndrome), which could put their lives in jeopardy.  Not long after that, I started having cervical incompetence and was put on bed rest for 4 weeks.  Isabella and Addisyn were born at the University of MD Medical Center.  Isabella suffered multiple heart conditions, Level 4 advanced IVH and a perforated bowel before she passed away at 8 days old.  Addisyn, the smaller of the two twins, showed to be an extreme fighter and progressed well during her 82 day stay in the NICU.

Addisyn is now a striving 2 ½ year-old who will be celebrating her 3^rd birthday 5 days before the Harford County March for Babies!  Today, her only setback is asthma, and a mild PDA, which gets monitored annually.  

We walk each year, not only for our daughters, but for the many other children who have been born too soon or with problems that may cause them to have to fight a little bit more. 

When we were going through our ordeal, we were not aware of the March of Dimes, and the information and help they could provide to us.  Because of this, we want to make sure that others who are in similar, or not so similar, situations, know that they are not alone and that there is information, and others out there to lend support.

A social skills tip for kids with special needs

Often a child with special needs has trouble relating to her peers. The developmental delay or disability may make it hard for her to communicate at an age appropriate level. Moments at daycare, preschool, on play dates or at mother/child play groups may bring stress and anxiety to a child (not to mention loneliness and isolation).

If this is the case for your child, don’t despair. She is not alone. Many children with special needs require help with socializing. It does not come naturally to them. And, if they have a speech or language delay, or another kind of communication challenge, they may feel very frustrated at not being able to talk and play with peers.

What can you do?

Here is a tip that has helped some children I know (including my own daughter):

Many pre-teens or young teenagers love spending time with younger children. Ask a teen from your neighborhood to come over and “pretend” to be a child again, and play with your child. Have her get down on the floor next to your child and build with blocks or Legos, play with dolls, have a tea party, or do whatever your child usually likes to do. (Try to avoid having them sit and watch videos or TV, as that is non-interactive.) Let the teenager engage your little one on your child’s level. Hopefully, your child will take the cues and respond back to her. A teen will be more patient with your child than a peer would be, making it a more successful and fun playtime.

It may take a while to facilitate a relationship, but the goal is for the skills learned with the teen playmate to transfer (in time) to that of children nearer your child’s age. And, the confidence gained at learning how to play and have a conversation will help her when she plays with a child her own age.

Start with short periods of time, such as 15 - 30 minutes. Gradually work up to longer periods. The goal is to get your child to slowly move from parallel play (playing beside another child but not interacting with him or her), to interactive play (when two children talk to each other and play together).

What about social skills classes?

Of course, formalized social skills classes or therapeutic play groups are also great ways to help your child learn to socialize, but often these classes are not convenient or are costly. If your child has an IFSP or an IEP, ask the team about creating specific goals to address social skills. Many times schools will offer social skills classes that include typically developing children and developmentally challenged children in one group. The social worker or facilitator guides the group with fun activities as social skills are learned and mastered.

Bottom line

With any kind of delay or disability, relating to peers can be very challenging. Try giving your child the opportunity to practice social skills with a pre-teen or teenager. The reciprocal skills learned in their play periods may boost your child’s confidence and skill level enough to be able to cross the threshold into successfully playing with her peers. It is certainly worth a try.

What has worked for your child? If you have a tip that was helpful, please share it.

Have questions? Send them to AskUs@marchofdimes.com.

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. As always, we welcome your comments and input.

Tags: Baby, birth defect, child, children, communication, delays, developmental delay, disabilities, early intervention, parallel play, reciprocal play, social skills, special education, speech, tip

 

Considering fertility treatment

If you’ve been trying to get pregnant for three or four months, keep trying. It may just take more time, even longer than you think it could. But, you may want to think about fertility treatment if you’re younger than 35 and have been trying to get pregnant for at least a year, or you’re 35 or older and have been trying to get pregnant for at least six months.

Here are some things you and your partner can do to find out if you need treatment:
   • Talk to your health care provider about whether or not you need treatment.
   • Learn about how things like smoking and weight affect fertility. It’s possible that you may be able to make changes in your life that will help you get pregnant without fertility treatment. Talk to your health care provider about what you can do on your own, without fertility treatment.
   • Tell your health care provider about diseases and other health problems in your family.
   • Keep a monthly diary of your periods. Write down the date you start and end your period each month. This will help you figure out when you ovulate. 
   • Have your partner get his sperm tested to make sure it’s healthy.
   • Have a test to make sure your fallopian tubes are open and your uterus is a normal shape. (When your ovary releases an egg, it travels down the fallopian tube to your uterus.)

If you’ve tried various options and think it’s time to speak to a fertility specialist, read our information on when and how to find a fertility specialist and center. You’ll find information on risks and benefits, who pays for it, and more.

Tags: fertility, getting pregnant, infertility, ovulation, Pregnancy

 

Baylee Story

 Baylee was born at 26 weeks gestation as a result of severe toxemia.  She was delivered by C-section at Ruby Memorial Hospital in Morgantown, West Virginia.  Weighing just 1lb 8oz and measuring 11 inches long with transparent skin, Baylee entered the world by poking out her tiny hand after the incision was made into the womb. When Baylee was born, her hand measured just 1 inch from the tip of her finger to the bottom of her palm. Next came the long awaited cry, a cry that resembled the whimper of a small kitten.

Baylee spent the next 78 days in the NICU at Ruby Memorial Hospital under close watch and accompanied by a rollercoaster of trials and tribulations. The first two weeks of Baylee’s life were spent with ventilator support because her lungs were too immature to sustain life outside the womb. Early on, Baylee displayed her independent nature when she extubated herself and “graduated” to C-pap. The next 6 weeks were spent with the titration of her C-pap

settings and the dedicated care of the staff to support her growth. Baylee endured three rounds of medication in attempt to close the PDA. Preparing for surgery, a final echo was completed and the family was relieved that the PDA had closed on its own.  Multiple tests were performed on a regular basis including eye exams for retinopathy of prematurity, ventricular bleeding in the brain, chest x-rays to measure lung development and GI studies for reflux. Through the grace of family, friends, strangers, NICU staff and the March of Dimes, Baylee was and continues to be a survivor. Against all odds, she continued to grow at her own pace. The final hurdles before her coming home were learning to suck, gaining weight and, finally, weaning off of the oxygen therapy.

Finally, on January 10, 2005, Baylee was brought through the front door of her home in Cumberland, Maryland. The March of Dimes has meant life for Baylee. Baylee and her parents have been walking in March for Babies for years and are forever grateful for the research conducted and the support provided by the March of Dimes.

 

Our new national ambassador

The March of Dimes is excited to introduce our 2014 National Ambassador, six year old Aidan Lamothe. Born 12 weeks early, Aidan weighed just 3 lbs and spent 7 weeks in a NICU receiving treatments for breathing problems, his low birthweight, and other prematurity related issues.

Each year on his birthday, Aidan visits the NICU and says “thank you” to the doctors and nurses. Even as a young child, he understood how serious it is to be born prematurely and decided he wanted to volunteer to tell his story to help others. As our National Ambassador, he will travel with his parents to help raise funds and awareness for premature birth.

Welcome Aidan!

Tags: Aidan Lamothe, low birthweight, National Ambassador, premature birth

Today is Love Day

First Step to Fundraising!

by Linda

It’s that time of year again - it’s March for Babies season! We all love walking for babies, but sometimes the hardest thing is kicking off your team’s fundraising. One of the easiest ways to do it is to donate to yourself when you register! It shows your family and friends that you believe in the cause you’re fundraising for and it feels great to see the first donation on your personal fundraising dashboard!

This year, we’ve made it even easier to donate to your own team - as soon as you register, a pop-up will appear prompting you to make a donation to yourself! Whether it’s just $10, $15, or $20 - you can jump-start your fundraising and feel great! The earlier you start, the more time you have to fundraise! So don’t delay - register today and kick off your fundraising that helps moms and babies through education and research!

Tags: March for Babies, march for babies 2014, Online Fundraising, register

Luke Alexander

Amanda and Marcas Hemmila married in October 2011 and couldn’t wait to start their family. By the New Year they found out they were expecting and started their pregnancy journey. At 31 weeks, Amanda visited Prince William Hospital to check on some pain in her rib cage that she assumed was a “lupus attack.” Since she was over 20 weeks along, Amanda was sent to Labor and Delivery and after just a few tests the doctors informed her and Marcas that she wouldn’t be leaving until she delivered their baby boy. Amanda’s body was shutting down. Her liver and kidneys had already failed, her blood pressure was at stroke/seizure levels, and her platelets had plummeted. All of the sudden their birthing plan was thrown out the window, the baby was given two rounds of surfactant therapy and Amanda was whisked away to undergo an emergency C-section. Amanda spent two days in heavy sedation and all she knew was that on July 10, 2013 she gave birth to a handsome baby boy, Luke Alexander, weighing 4lbs and 6oz and 17inches long. They spent a total of 29 days in the NICU, but Luke came home without any major health issues. They have encountered some challenges, 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, but overall Luke is now a lively and lovable 18 month old boy.

Being the ambassador for Prince William County is an honor for Marcas and I. When people hear the word “premature” they often associate it with words like small, weak, and fragile, but these babies are stronger than we give them credit for. They come into this world fighting. We love watching Luke grow and learn with each and every passing day and we want people to know that the emotional roller coaster that happens in those first few days, weeks and months only makes you stronger as a parent.  And we NICU parents are a special group for sure! 

What is Torticollis?

Torticollis literally means twisted neck. It is a something you have most likely had at one time or another—many of us have probably woken up with it after sleeping in an unusual position.  However it can also occur in newborns.

In newborns, it is called infant torticollis or congenital muscular torticollis and it is relatively common. Boys and girls develop it equally.  The cause is not exactly clear. It may occur if the baby’s head is in the wrong position while growing in the womb, or if the muscles or blood supply to the neck are damaged. It may also occur after a difficult birth, especially if the baby is very large or is delivered in a breech position.

In torticollis, the sternocleidomastoid muscle, the large, rope-like muscle that runs on both sides of the neck from the back of the ears to the collarbone, is stretched or pulled. If it tears, then it causes bleeding and bruising within the muscle. Scar tissue then develops and this causes the muscle to shorten and tighten, pulling the baby’s head to one side. The scar tissue forms a mass or lump that sometimes can be felt on the side of the neck.

Congenital muscular torticollis may be visible at birth or it may not become evident until several weeks later. The following are the most common symptoms:
• tilting of the baby’s head to one side
• the baby’s chin turns toward the opposite side
• a firm, small, one to two centimeter mass is present in the middle of the sternocleidomastoid muscle

Babies may experience symptoms differently. And the symptoms of torticollis may resemble other neck masses or medical problems, so it is always important to talk to your baby’s health care provider if you are concerned.
In most cases torticollis is diagnosed through a physical exam, but sometimes x-rays and ultrasound may also be utilized.  

Treating torticollis involves stretching the neck muscle. Passive stretching and positioning are used in infants and small children. The best way to treat torticollis is to encourage your baby to turn his or her head in both directions. This will help to loosen tense neck muscles and tighten the loose ones. Also it is important to remember tummy time.  Tummy time  helps to build both neck and shoulder muscles and helps your baby get ready to crawl.  Tummy time is important for all babies—not just those with torticollis.

Most babies with torticollis improve with stretching and positioning exercises.  In some cases though, surgery to correct the neck muscle may be necessary. Again, if you think your baby may have torticollis, make sure to talk to your health care provider.

Tags: breech, newborn, torticollis, tummy time, twisted neck

 

 

Early Bird Incentive

Thinking about another baby?

After giving birth, there are some women who want to have another baby right away.  Others need a bit more time in between children.  Although there is no right or wrong time to have another child there are certain health considerations that point to optimum birth spacing.

Timing pregnancies less than 18 months or more than five years apart could raise the odds of the second baby being born prematurely, at low birth weight, or small for gestational age.  With too short an interval, researchers theorize, the problem may be that a mother’s body needs more time to recover from the stress and depleted nutrients of the first pregnancy.  With longer spacing, the problem could be that fertility gradually declines after a woman delivers.

Some research (although limited) suggests that a pregnancy within 12 months of giving birth is associated with an increased risk of placental abruption or placenta previa in women who previously had a C-section.

While waiting may be ideal, we understand that not all women can wait 18 months before trying for another child.  If you are thinking about having another baby, make sure you schedule a preconception checkup with your health care provider.  The two of you can discuss any health concerns.  Also, if you have had a premature baby, make sure you discuss ways to reduce your risk of having another premature birth.    Together you and your health care provider can choose the best time for you to add to your family.

Tags: Planning for Baby, preconception health, Pregnancy