On Monday, we were in the hospital for Tehilla's cardiology appointment. I want to recount to you a situation, to make the rest of this post clear.
I was sitting in the waiting area of the pediatric cardiology offices, after our appointment with Dr. Golander. After each appointment, the doctors go into an office and type up an entire summary of the echo and their findings, to put on file. They, then, give you a copy. I was sitting on the chairs, with Tehilla in my lap and Mechal sitting next to me, playing on my phone. A hospital porter wheeled a newborn baby boy into the department, with his mother following directly behind. The porter dropped them off, and by the way this new mother said, "Toda Raba (thank you)", I could hear that she was clearly an English speaker.
I watched her sit down in a chair close to mine. She didn't sit fully back; her back was stiff with tension. She looked at her little newborn baby boy, and gave him a weak smile. Then looked up and stared at nothing specific, and had a look on her face, that I recognized, all too well. It is a look that any parent who has a child with a disability, disorder or sickness has worn on their face, that very first time. Then, I did something for her, that I wish someone had done for me.
"Hi. Is he your first?"
"What? Oh, no. He's my second." She, again, peered down at her son and gave him that weak smile.
"What is going on with him?"
She looked directly at me, with tear filled eyes, and said, "We were supposed to be discharged today. The pediatrician was just giving him a final check and he said he heard something. Now, we are here. I just don't understand. He was fine. He is supposed to be fine."
"I hope that everything is completely fine and he is as healthy as can be."
"I want you to know, that if there is something, you are in the best hands. The doctors and surgeons here are phenomenal. But I still hope that everything is totally fine."
For the first time, she really looked at me and said, "What's your story?"
"My baby was born with half a heart."
She gave that look, that we have seen so many times, of utter disbelief.
"What? How is that possible?!? How do they make her another half a heart?"
"They don't. They restructure the half that she has, to be able to function like a normal heart. She has had two surgeries and will need two more."
"Oh my G-d." She then glanced over at her baby.
"Not to worry. We knew about this in the pregnancy. We found out during the anatomy scan." Her shoulders relaxed just a drop.
I stood up, walked into the office and took a pen and a piece of paper and wrote down my name. "I hope that everything is completely fine with your son. Just in case, this is my name. Please look me up on Facebook and I can help you find resources and support."
She nodded her head and blinked back tears. "Thank you. Thank you very much."
"You really are in the best of hands. I completely recommend Dr. Golander."
Dr. Golander came out shortly after that, with our papers and we left.
I wrote this story in detail, to express this small exchange that was infused with so many emotions.
This is not my first thoughts. Rather, I have been mulling these ideas and thoughts over for months now. Six months, to be exact. I have had discussions with other heart mothers in Israel. I have spoken with our nurse, Yifat and our cardiologist, Dr. Golander. Everyone agrees and many many are on board.
In America, there are organizations like Little Mended Hearts, or Sisters by Heart or Little Hearts. There are incredible programs like Tiny Superheroes or Beads of Courage. There are extraordinary organizations and programs working hard, to provide support and resources to those newly diagnosed with congenital heart defects and continued support for those living with it. Shortly after being given a diagnosis, a doctor or nurse will help those families by directing them towards help.
Here, in Israel, we do not have any of that. I was left with words that I couldn't pronounce that had no real meaning to me and a horrifying prognosis. I went home and did a search on Google. There, I was directed to information that was explained on my level and support groups on Babycenter. From there, someone pointed me in the direction of the Heart Mamas group on Facebook.
Ron and I were lost in a sea of new terminology and were completely alone, for awhile. Our friends and relatives could only provide us with the same information that we had already seen.
There needed to be a pamphlet handed to us by the cardiologist that did my first prenatal echo. There needed to be a website in English, Hebrew, Russian and Arabic with smiling faces of heart warriors and lots of information. This website had to have a chat forum for families like ours. There needed to be one direct spot to go to that had names of recommended cardiologists, social workers with helpful information, and lists of contact information.
Instead we have slowly been wading through this and compiling information. After speaking to many heart families, in Israel, they have all had the same experience.
There needs to be something, but there isn't. But that's going to change.
I want to start an organization, and build it up slowly. It will have everything that I have already mentioned, and hopefully build on that. If you have been following our journey and read through this post until here (I am so sorry for it's length!), then this is your chance to help us. Not just us, many more like our family.
If you have a skill, profession or business, that can help us get this off the ground and are willing to donate your time, that is what we are asking for at this point. We need to start with a website, translated into the various languages that I mentioned. If you have experience running or starting up a non-profit organization, if you are a web programmer, if you are a translator...we really really need you. Even if you would like to just crochet or knit little hats for newborn heart warriors, we need you too.
Please contact us at firstname.lastname@example.org or comment on the bottom if you can think of some way to help us get this started.