Four million babies are born in the United States each year, and 40,000 of them will have a congenital heart defect (CHD). CHDs are heart defects that are present at birth and are the result of a problem that occurred during fetal development. Each year, thousands of families and new parents will face the challenges that come with caring for a child with a heart defect. Each decision they make will affect their child's health and their family's well-being.
1. Learn all you can
The initial step to take after the diagnosis of your child depends on the level of severity of the CHD. In some cases, no treatment is necessary, while for other children, immediate surgery is a real possibility. Either way, you should be ready to face tests such as electrocardiograms and chest x-rays in order to determine what help your child will need to thrive and survive.
Isabelle Ouimette, mother of a child with CHD and president of It's My Heart's Boston chapter says to always have a notebook in hand and write down every question and concern you have, along with the answers, who you spoke with and when. Ouimette advises parents to stay away from the internet when they learn what type of CHD their child has. Each case is different and therefore so is each outcome. The information you find online will be overwhelming and will probably not have any bearing on your child's health.
2. Face your emotions
Allow yourself the chance to grieve and deal with your emotions. Face any guilt you may be feeling over whether or not you could have done something to prevent this, and let yourself go through the stages of anger and denial as well. Ouimette says it is best to take one day at a time because there will be good days and bad days and you will have little control over most of it.
3. Pick your child's doctor
Choose your child's cardiologist and medical team carefully. Ouimette's experiences taught her that having open communication with the doctor will help you to ask the right questions and allow you to trust in the people caring for your child.
"If you are not happy with your current doctor," she says, "always remember that you have the right to choose another because your child's life is at stake and you have to trust your gut instinct."
4. Prepare yourself
Your child may have to undergo surgery.
"Get everything in writing from the hospital and ask all the questions you have," says Ouimette.
She found it helpful to establish a strong relationship with the nurses assigned to her child's doctor. Because of this, she received prompt answers to questions from compassionate people who were more understanding of what her family was going through. Know how long the surgery will likely last, how long your child will be in recovery, and what you can expect post surgery.
Knowledge is power, and so is a calm spirit. Ouimette calls her son's open-heart surgery the most frightening time of her life, and spending the hours on a different floor of the hospital with her husband was a helpful way to remain calm and positive.
5. Find support for yourself
Support is vital for families dealing with the diagnosis of CHD. Find a parental support group in your area by asking the hospital staff for the information. You can also find online communities of other families who have gone through or are going through what you are.
Ouimette says that your insurance company may also provide a 24-hour care line that is available to answer any medical questions that you have or to talk about something that is bothering you. You should also talk with your hospital's social workers about respite care and home help services, as well as a counselor that may be able to help you cope.
It's My Heart is one place families can turn to for support during this difficult time. Based in Houston, the nonprofit has eleven chapters across the country. They offer support through comfort bags and activities, and work to raise awareness of CHD in the community and among pediatricians.