How to Handle Your Child's Heart and Rare Diagnosis

Never deny a diagnosis,  But do deny the negative verdict that may go with it. 
-Norman Cousins

"Your son can't survive until next week if he wasn't operated"
" From 10 children with DiGeorge Syndrome who similarly have Tetralogy of Fallot, Pulmonary atresia ++, 7 of them die in early age, you should be thankful your son is still alive until now"

Those words above would remain with me until the rest of my life. The early diagnosis of Dario which drives me crazy, yet it strengthens me from inside. That time, I wanted to prove to everybody including medics that Dario could survive if they believed in him like I did. 

From what I see, in my home country Indonesia, most babies with congenital defects are not given fair chances. 
" His case is too difficult, there's nothing we can do"
" Even if I explained it to you, you wouldn't understand, now go home, and take a rest"

Likewise, parents are not given such a proper explanation, let alone positive outlooks about their kids' diagnosis.
In these crucial periods, parents are usually left with desperation, no clue, and nobody to have a good discussion with. At least that was my experience.
Experience is the best teacher, the saying said. It is! from that experience, I know now how to react and handle my son's diagnosis. 

Dario has a complex and extreme case of Congenital Heart Disease in which his heart's 4 chambers got a lot of defects, a hole on his ventricle, hypoplastic arteries. His heart diagnosis from the very first time sounded like this: Tetralogy of Fallot with Pulmonary Atresia, Ventricular Septal Defect, Mapcas, and Subclavian right lusoria. 

The very first time that I knew Dario's official diagnosis, I was so devastated, I couldn't eat, I couldn't sleep, I looked like a walking zombie till a point when doctors asked me to go home, take a shower, take a rest and come back the next two days.  I took their advice reluctantly and came back stronger,  calmer, the better version of myself.

If only I could turn back the time, I'd tell my past self that excessive thinking would not help me out. I should stay focus and seek the solutions. Crying out loud would definitely help to unload the burden but stop it once your heart told you to. Ruminating the present condition would only depress you and close the doors to many other possibilities.

Thus, I can relate so much to those parents who heard their child's heart diagnosis for the very first time. Scared, depressed and extremely devastated, you name it, we could even barely express it.

So are you one of those parents that getting child's CHD diagnosis? If yes, the very first thing you have to do is thinking straight, without a clear mind, you wouldn't be able to save anybody's life especially your kid's.

Cry a river, but remind yourself that one little soul depends on you, you have no time to be melancholic
Cry it, scream, whatever you wanna do to express your grief. Yes, life isn't fair but if you keep asking yourself or God, why you do have to endure this, you won't get any response. You just have to get used to this so-called unfairness.

Calm your self out, do not oversharing your child's diagnosis as common people do not possess a good understanding of your child's condition. Their opinions would bother you without you even realize it.
When you got your son's diagnosis, you must be tempted to share it in social media. Don't! If you shared it, you must be ready for the comments which might even let you down or even confused you.
" Oh poor boy, you must have been suffering"
" What did you eat while you were pregnant mama! it's not right that your son could get this kinda thing"!
" You should repent to God before it's too late otherwise your son wouldn't get any better"
You must be familiar with these comments from people on social media. These lines would drive you crazy, that's why it's important not sharing any part of your child's diagnosis to the point in which everything is clear, you are calmer and your child got the medication he/she needs

Your child still get a big chance to survive if you allow him/her to
Do not lose hope, no matter how dreadful the diagnosis is. Your child could bounce back if you believed in him. A child has an inner contact with his mom and dad, if you were sad, he would be sad too, if you lost hope and decide to let him go, he would lose hope and let him go as well. Beware of your thoughts! Your child can feel them!

Do consult with the best pediatric cardiologists and surgeons but keep seeking alternative opinions.
Make sure you get to consult with the best team of cardiologists and surgeons about your child's condition and yet, keep seeking the second, third, fourth and so on opinions from other cardiologists and surgeons. Doctors can be wrong too, your job is to make sure your child gets the best from the bests.
One of my friends who has a son with CHD contacted renowned hospitals around the world by email. She sent each of them the copies of her son's diagnosis. Some of them answered and even suggested the departments she could contact. Maybe you could try this too, and most importantly, it's free of charge.

Do find a support group.
At first, I didn't think finding a support group could be beneficial, I was even introduced by someone to one group of parents with CHD babies. Through time, I felt my understanding about CHD was getting better and I could even share my deepest thoughts and fears with them. 
Try it, you may even find such sincere friendships.

Plan your next move carefully.
Once you got your child's diagnosis, it's important you plan your next move. Preparing everything including yourself mentally. If you are not covered by insurance, you should plan on how you will act financially. Seek helps if you didn't have enough resources to get your child medicated, set a gofundme page maybe, or ask someone to sponsor you.
Keep in mind, your money and other materials could come back, but if your child wasn't medicated soon, you could lose him forever.
I lost everything when I brought Dario to Kuala Lumpur to get his first open heart surgery. My car was purchased by my best friend a day before our departure, My house in Indonesia was sold. I held a garage sale before I moved to Italy.

Get your child medicated soon, do not procrastinate, the earlier the better.
Most of the time, a diagnosis could lead to an open heart surgery, not to mention countless blood tests, intubation, catheterization, and other medical intervention.
As a mother, you are afraid, you are upset that you have to give your precious child to the surgeons and doctors. He would be suffering, you said. But hey, listen, it's better to see it now than after because chances are when babies with CHD are growing, their bodies compromise a lot and it might lead to various fatal complications and it would be hard to be managed surgically. Some would be even 'conservative', a term to define when a CHD could not be cured surgically for its great risks, so one has to consume some medicines and wait for the miracle.

Don't let yourself down by diagnosis as it doesn't define the prognosis.
Diagnosis can be as bad as it is but it tells nothing about your child's future, and with the medical advances now, chances are your child could grow as normal as he can be! Future is bright!

Remember, whatever happens, you have done your very best, and your child must be really proud of you.
There are things in this world that can't be changed no matter how well your endeavor is. Sometimes you just have to accept them as they are because you have done your very best.
You are still the best parent your child could ask for. You should be proud of you.

Send hugs to every CHD Parents, Mom and Dad. 

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