Every year, 100,000 babies don't make it to their first birthday because of CHD.
Your Child was Just Diagnosed with CHD – What to Expect Next

Approximately 66% of CHD families will receive their child’s congenital heart disease diagnosis after their birth.  Some will be shocked, others will be completely devastated and overwhelmed, and many won’t even know what CHD is.

It’s important to be informed about your child’s diagnosis and what it means so that you can advocate for your child and ensure they get the best care possible.  More importantly, it’s important to know that you are not alone in this. About 40,000 babies will be diagnosed with CHD in the U.S. every year, and with only 1/3rd of those cases being caught in-utero, there are 25,000+ other families who will be blind-sighted with a post-natal CHD diagnosis. 

So what comes next? What can you expect? We talked with Heart Parents to create this guide that will help you better understand what will happen next for you, your family, and your Heart Warrior.

Diagnosis

If you weren’t one of the lucky few whose child was diagnosed in-utero, that means your child was given their CHD diagnosis after birth. For some, symptoms will be so severe that a diagnosis is made within minutes or hours after birth. Other heart defects show little to no symptoms at all, and a diagnosis might not come for months or even years. A few parents share how their child was diagnosed below:

The doctor heard a heart murmur at her three-year-old wellness check and sent us for an echo. There were no other symptoms besides the murmur.

Our six-month-old daughter was very sick and a nose swab confirmed she had RSV.  Doctors then did a chest x-ray to check her lungs and noticed her heart was enlarged.  The symptoms she had prior that would indicate a heart defect were trouble gaining weight, constant fatigue, low circulation, sweating while eating, and fast-paced breathing. We always knew something was wrong, we just didn't have a doctor who would listen to our concerns.

About five hours after birth, Sammy looked a little dusky. The nurse took her pulse ox, didn't like the numbers and took her to the nursery to check her there. They started running tests - chest x-rays, an echo, etc. - and then she was diagnosed.

I took my daughter to a fourth doctor after being told three times I was crazy and that she is completely healthy. He listened to her heart for a couple minutes – which felt like 20 to me – and looked at me and said she had a hole in her heart and that she needs to been seen by a cardiologist as soon as possible. She wasn’t gaining any weight and just didn’t look right to me. I had a daughter a year before her and it just wasn’t the same.

Takeaways: Advocate for your child. Some doctors will tell you you’re just experiencing so called first-time parent syndrome, but it is important to demand that tests be carried out. If the doctor refuses, find another one that will perform the tests.

Post-Diagnosis

Doctors will begin creating a treatment plan for your Heart Warrior. This could include anything from medication, to catheterization procedures, to open-heart surgery.  It may even just be regularly scheduled appointments with a cardiologist to monitor their condition if intervention isn’t needed at that time.  Depending on the severity of your child’s heart defect, they may need care from a specialized hospital if the current one is not equipped to handle their case; this could mean that your child will be transported via ambulance or helicopter.

As a parent, your emotions may begin to run wild with questions and worry.  This is a completely normal reaction. You might take to the internet to find answers to the thousands of questions you have, and while the internet does have a lot of useful information, it’s important to remember that each case is unique and the internet might not have the answers for your child’s specific situation.  Write down all your questions and consult with your doctor who will be able to provide the information that is most relevant to your child’s case.  Our Heart Parents share how they felt after receiving their child’s diagnosis:

Shocked! So scared! I had an echo while I was pregnant that was normal. I didn’t know kids could have a heart defect that wasn’t apparent from birth [her son was 3 at diagnosis].

We felt lost. We were hundreds of miles away from home. We were just told our perfect baby was in heart failure and she needed heart surgery as soon as she was healed from RSV. Although it hurt, we were so happy we finally got an answer.

I was completely devastated, scared, and didn’t know how to feel. Never have we had anyone in the family with heart issues. At the time I felt guilt, like there was something I did wrong during my pregnancy to cause this.

Like time had stopped. I went from being so happy and joyful one moment to completely overwhelmed the next. I was so scared and shocked. I just wanted to know if he would be okay. I wished I had a crystal ball to know what would happen and to know what the future would hold. It was all very rushed because he had to be flown to another city for treatment that evening.  Being separated from my baby was horrible.

Complete and total shock. My brain went completely blank. I couldn’t think clearly. I couldn’t focus. It was just like the movies when you feel like all you can hear is static and nothing feels real anymore. I forced myself to focus on what the doctor was telling us. I was biting my lip to keep my emotions together. I felt like I couldn’t think of enough questions to ask. I was terrified for my son.

I felt absolutely numb.  To this day, I still have trouble remembering a lot about the day my son was born because it was so traumatic hearing that news and having our lives completely turned upside down.

Takeaways: It’s important to find a coping mechanism. The following might help you navigate this confusing, stressful and traumatic time:

  1. Support from family and keeping them in the loop might actually help you better understand what's happening with your child from a medical stand point.
  2. Bond with other parents that are going through the same thing in the hospital.
  3. Try to find humor when you can.
  4. Let out your emotions, ask all of your questions and be there for your Warrior.
  5. Join a support group.
  6. Find faith in God and in the medical team.
  7. Stay in the moment, try not to look at the what-if’s. There will be plenty of times where you take two steps forward and one step back, but keep pushing through. 
  8. Don’t be afraid to lean on your friends and family and ask for help (babysitting your other kids, bringing you clean clothes, dinners, etc.).
  9. Focus on your own health as well and prioritize getting your mental health under control. See a therapist.
  10. [For Moms] add in a bottle of formula instead of breast milk so another family member can feed your child while you rest. Take a bit of time to relax each day.
  11. Connect with a CHD organization, you'll find that thousands of people are in the exact situation and thousands more have gone through it before.
  12. Know that there is an amazing community of CHD families to support you through your journey.

Treatment & Recovery

Depending on the type and severity of your child’s heart defect, they may need some form of treatment for their CHD. This can include anything from medication, to a catheterization procedure, to open-heart surgery, or even a heart transplant.  It is important to ask your doctor a lot of questions and to prepare yourself if your child will require surgery.

Prepare yourself to see your child post-surgery. This is very difficult for a lot of parents as your child will come back from surgery with a lot of wires, tubes, and medical equipment hooked up to them. They may or may not still be intubated, and there is a possibility their chest will still be opened up. They will look sick, very sick. Ask questions about the machines and their function, this will help you better understand everything and not be so afraid of the state your child appears to be in.

Life in the hospital. Recovery from open-heart surgery can take days, weeks, or even months. It is all dependent on your child’s specific case. Prepare yourself for the hospital life by gathering the essentials from home (clean clothes, toiletries, books, etc.) and make arrangements with friends and family to care for your other children at home if you have any. Prepare yourself for good days and bad days.  At times it will feel like there are setbacks at every turn and that you will never get out of the hospital. This is normal and a common occurrence in the road to recovery from a CHD-related surgery.  Heart Parents share their experience of living in the hospital:

Not as bad as I expected because we were really well-prepared before surgery. We met with the whole team, were told what to expect at every step and toured the unit beforehand. That being said, I didn’t get much sleep and it was torture to see my child suffer.

We were in the hospital for five weeks when she was first born and then another seven weeks for her Glenn surgery. We lived at Ronald McDonald House, but I lived in the hospital room a lot of the time. The most important thing is to take time for yourself. We would play games, watch the valet guys park cars, go for walks around the hospital; just finding ways to pass the time.

My first daughter stayed at home with my mom and she had a pretty hard time without me around so that was pretty tough on my heart, especially because I couldn’t be there for her when she also needed me.

You live hour by hour in the hospital, especially when your baby is recovering from open-heart surgery at five days old and five pounds.  It is also very important to get to know the nurses and doctors.  I believe making a strong connection helps the communication you receive when you are under someone's care.

We lived in the hospital for 32 days. It was very hard. We slept in a hotel that was half a mile away. I will say being in a hospital room for 18+ hours every day is very draining. You get into this routine: walk in, hand sanitizer, ask the nurse for any updates, wait for the doctors to make their rounds and see if they have a surgery date scheduled yet, hold and feed your baby. I remember one nurse saying “you can’t be strong for her if you don’t rest and take care of yourself first.”  That stuck for me because she was 100% right. Make sure you are resting, eating, and staying hydrated.

It’s like being a guest at someone’s house; the amenities might be there but you are never really completely comfortable. You might sleep a bit here and there but you never really rest. Food sources become slim and it can be difficult to eat quality meals.

It’s non-stop being woken up, you get used to the repetitive beeping, you learn what alarms to be worried about and which ones are fine.  We even learned how to quickly fix some bedside issues with our baby.  It is a lot to take in, but staying at the hospital helped us feel connected to our daughter.

Takeaways: Seeing your child in pain will be difficult, prepare yourself for that.  Be hopeful, but prepare yourself for setbacks and a hospital stay that might be longer than you'd hoped for.  Be there for and take care of your child but prioritize your own health and sanity as well.  Allow yourself to have little escapes from the hospital without guilt-tripping yourself. 

Coming Home

After spending so much time in the hospital, hoping and praying for the day you get to take your little one home with you, it’s easy to forget about life after the hospital. This can be a hard transition for a lot of families as they face the reality that CHD is a lifelong disease. Depending on your child’s condition, there might be some at-home medical care that you must take on: administrations of medication; regularly monitoring of heart rate, blood pressure, oxygen saturations and other metrics; administering feedings via G-tube (a tube inserted through the abdomen that delivers nutrition directly to the stomach and is somewhat common in CHD babies/toddlers); among other things. These tasks can feel daunting and scary at first, but they will become part of your everyday life that will feel no different than changing a diaper or preparing a bottle. CHD Parents share how they adjusted to life at home with a medically complex baby:

Humor.  Wine.  Coffee.  Find friends who get you, who you can vent to.  Realize you need help too, and it’s totally normal to be mad, angry, frustrated, sad, lonely – all of it.  You will become an insurance agent, nurse, cardiologist, and advocate for your child.  Do what works for your family and learn to let go of people who don’t support you. 

Living with a child that is considered medically complex is very hard. I am constantly worried about something; if it’s too hot or too cold, if someone is sick, if her breathing is okay, if her lips look blue, literally anything and everything is on watch.   Take it day by day. Worry about today and only today.

CHD is a lifelong disease.  Learn as much as you can about your child's medical situation.  There truly is something to be said for a parent's instinct;  if you feel something needs to be done, or shouldn't be done, talk to your provider about it.  Also, do not look back and beat yourself up about what you "should have realized" or "should have done.”  If you think you need a second opinion, get one.

I set alarms on my phone so I could give him his medications around the clock. I kept everything very organized and wrote down what med he would get at what time. I made sure to take his medications in a cooler with us wherever we went.

We try not to worry in between annual check-ups, but we do. Every cold, sniffle, and injury cannot be overlooked with heart babies.  It is always better to be safe and get checked out by a doctor.   Each year poses new challenges.  Geoffrey will be going off to college in a year-and-a-half and that really scares me, the fear of CHD never goes away.

We went home on an event monitor so we had an extra set of eyes to rely on. If you think that’s helpful, then push for it. Our insurance paid for ours and it was such a wonderful thing to have a small amount of peace of mind.

I now have days where I don't even think about his heart condition. Every situation is different, but after a very chaotic start, we now live a normal day-to-day life. I know he will need more procedures as he grows older, but it doesn't seem as scary now as it did before.

Takeaways: It's hard to come to terms with the fact that CHD is now going to be a part of your family's life forever, but there is an entire community of Heart Families walking a parallel journey to your own, who are there to support you and embrace you with open arms. There will be good days and bad days. It's okay to break down on the bad days.  It's okay to celebrate the good days and milestones, even knowing other families are having a hard time. 

Heart Parents share the things they want all parents to know about living life as a CHD family:

That they have options other than whatever children’s hospital is nearest to them.  That they can and should question medical professionals.  That you have to advocate for your child and be present while they’re in the hospital.  That YOU CAN DO HARD THINGS. 

Be prepared for the worst. Screen for everything you can in-utero and give birth in a hospital with a proper NICU. Do not be afraid, no matter what is thrown at you.  Your new normal will be different and that will be okay.

You will love them just as much, maybe more! You are their hero, and they will be yours. You will worry constantly. I read something about CHD kids having scars on the outside and Heart Parents having scars on the inside. That is so true.

That things may not go as planned, but with the help of doctors, family, friends, and the grace of God, you can get through the difficult times.

A final word from Heart Dad, Billy: To all the other families, stay strong and tell your family and friends you love them. All of the things you worried about before will no longer matter. You’ll now understand just how painful life can be but you’ll also appreciate it in way no one else does. Don’t let that appreciation for life fade. Take it one day, one hour, one minute at time. This will suck, but it is okay to be happy too.

It takes an army of people to save these kids’ lives. An army of medical staff, foundations, and parents who will be there for you if you need them. Seek out their help; they want to help you as much as you need it.

When the waters have calmed and you have adapted to your new normal, do not be afraid to get involved. You are now part of the CHD family and there is room for help from everyone, even if it is just sharing your story so others know they are not alone.

May 23, 2019 by Lani O'Gorman

Comments

Antoinette McKellar

Antoinette McKellar said:

Things have drastically changed for the better since my daughter was diagnosed with 4 CHD’s twenty three years ago, gratefully, hours after her birth.
Back then, there was no support group, no awareness groups, chat rooms, or anything of that nature – if you had no family nearby for physical or emotional support, it was horrible.
My friends who had normal” babies didn’t understand why I practically lived at the hospital . I am so glad to see that huge advances in these past years have been made to educate, and support CHD parents.

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