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So My Child has a Congenital Heart Defect, Now What?

Updated on December 27, 2012
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Hearing the Bad News

Most first time parents, thrive on receiving the joyful news accompanied by childbirth; sex of the baby, weight, length, time of birth, etc. However, no one expects to hear the horrifying news that your child has inherited a congenital heart defect.

With thoughts of imminent death looming in your head, much of the information that you receive next, becomes a total blur. The moment of shared elation between you and your partner has faded and now the burning question burying a thorn in your side is, "What do we do next?"

Developing an Action Plan

A flurry of questions will enter your head, as doctors spew medical jargon that explains your child's diagnosis. If you are anything like the average couple with little to no experience in the medical field, none of this will make any sense at all. First things first, ask for pencil and paper. Write down your child's exact diagnosis and the options available to you. Since you are dealing with the heart, it is crucial you make a prompt, well-informed, and mutual decision. Whatever decision you make, both parents have to be committed for the long haul.

Find a Support Group/Person

Throughout the decision-making, you will find that having a group of people or person to lean on for support; will make the process of dealing with the pending medical decisions a lot easier to bear. The fact that it is your child, whose life is at stake, often makes it difficult to make the most medically sound decision.

When consulting with a physician, note any questions you might have. Remember, doctors are there to serve you, and should always have the patient's well-being in mind. It is good to write out your questions in advance, and bring them with you to any appointment. While you are meeting with physicians, note any other questions that arise.

It is a good idea to bring a person, aside from your partner to an appointment, so that they may help process the information given to you with an unbiased opinion. The task of processing all of the information regarding your child's defect, the procedures involved, the risks, the recovery time is overwhelming. You have just brought a child into the world, with hopes of bringing them home into their themed nurseries, and are now faced with a life-changing decision! This is enough to unnerve most people.

To Research or Not Research?

Now that you have a label for your child's heart defect, you decide to research or not research on your own. My advice is to research with caution, understanding that every case is different. Living in the 21st century offers opportunities that were never available in the past, with a simple click of the mouse; the information highway can provide clarification for the many questions you are pondering.

Start with identifying and researching the defect your child has. A great starting point is to visit the American Heart Association. In addition to this, you should research the procedures your physician has suggested for your consideration; the risks involved in each, the life-long procedures or medication required and current life expectancies.

Take an opportunity to visit national and local support groups via internet to read about other people's experiences in dealing with similar situations. You will be tempted to read about the different outcomes families have had. Fair warning, some of the outcomes may not be positive or promising to what you're dealing with. Stay focused and remember, cases vary. Your child may not have the additional defects or symptoms that other children have.

When you have done all of your research, carefully examined all of your options and decide to commit to the results of your decision, then all that is left to do is take action with your child's best interest at hand.



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      LLyons 4 years ago from California

      First take a breath, you have just brought a beautiful baby into the world. Next, never ever blame yourself, as mom's we tend to. If you have a friend who is a nurse or knows a nurse who works with in a neonatal intensive care or NICU (nikU) get hold of them. Take this life line to your doctor's visits so they can hear what is said as well as you. As a nurse and a parent of a child with a critical disease, you only absorb a portion of what is said, sometimes your brain stops at "congenital heart defect" and the rest is gibberish. A medical savvy third party can remember what the doctor says and later explain what was said as many times as you need. From there you go forward one day at a time, take pictures, rejoice, hold your baby as much as you can, live life. I will keep you in my thoughts and prayers.

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      J. Kennedy 4 years ago from Eastvale, CA

      Thank you for your comment. Yes, it is even better if you have someone in the medical field accompany you! They'll help guide what questions you ask and understand the medical terms explained to you! You are right , embrace every moment and let your child live happily.

    • jtrader profile image

      jtrader 4 years ago

      Good advice. Having good support is essential for parents who are faced with this.

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