Dana lives in Seattle, and Tracie lives in Germany. We are businesswomen, writers and humorists. We write about life, dating, and today's modern women.
Last week, I received a message from the founder of the Fontan Heart Organization in Germany, a non-profit voluntary association for children/affected persons born with only half a heart of which I am a member of. It had come to her attention that the father of a newborn–he is German, and his wife–of Japanese descent, were the new parents of an infant born with a complex heart disease. The mother, I’ll call her Niko, doesn’t speak German but does speak and understand some English. Could I help them I was asked? I immediately messaged the father who connected me with his wife.
“My baby is one week old,” Niko told me. “They want to do surgery tomorrow and I am afraid. I don’t really understand what is wrong with her and I don’t know if it is the right decision to do surgery, I don’t know what will happen in the future. I just want her to have a long and healthy life with us.”
I spoke with Niko for about 20 minutes, trying to get everything out of her about the baby’s condition that I could. I did my level best to assuage her fears; the baby was in a leading German hospital–my son also had surgery there and the doctors would not say that the baby’s condition was critical and she needed surgery if she didn’t. I closed our conversation telling her that she had to BELIEVE that her baby would be fine, her fears were absolutely normal, that I would gather as much info as I could to help her understand the situation, and to get some rest if she could and try to stay calm and transfer that calmness to her baby because she will be able to sense it.
She thanked me over and over and over again and I told her over and over and over again that was not necessary. She and her husband then went into the chapel to pray.
The following day, she messaged me: “…our daughter’s operation is done but the surgeon was sick and different doctor did it (they didn’t even tell us before even we asked) and now they are saying they are not sure if she can survive tonight…
IMPORTANT NOTE: The surgeon scheduled to do the operation has done 3500 pediatric heart surgeries and the surgeon who actually carried out the surgery–400.
The baby had to be placed on an ECMO machine, used for patients with life-threatening, heart-related conditions; it acts like the heart and the lungs.
Niko tried to speak to the cardiologist whom she said was short-tempered and had no time to discuss the life-threatening situation her week-old baby was in. “Would you get this kind of treatment in Japan?” he spat at her. Now, I am a passionate person. I have stood knee-deep in Niko’s shoes having a critically ill baby, not understanding the language of the country I was in, and not having any friends or family around for support so the only thing I could possibly think was
how dare he?!
Clearly, this was not working for me. I told her to call his secretary and make an appointment for her to speak with him the following day. I would go with her. I canceled my appointments and that’s what I did.
He hesitantly allowed me in on the meeting for which he said at the outset that he only had 30 minutes for. I kept checking the clock on the wall behind us. With about 10 minutes left, I interrupted Niko’s husband, who understandably so, was stumbling over asking questions and getting answers for which he could not possibly understand–which was taking up precious time.
Lesson: When speaking with a doctor, have your questions written down with space in between for answers. You can study and research later if necessary.
I asked the cardiologist to tell me as briefly as possible what the situation was with the baby. I told him one of the deeply troubling problems was that a surgeon unfamiliar to the parents carried out the operation. One word led to another, and I had to remind myself to stay calm because the baby was still under the care of this clinic. A quote from my mother in my book, Incompatible with Nature came to mind: “You’ll get more with sugar than you will with shit,” she said.
Sugar can bad for you and I honestly thought I would gag, but I had no choice.
Niko and I have been texting morning, noon, and night since.
She has said that each time she asks someone a question she gets a different answer and doesn’t know “how I can save my baby.”
I told her to WRITE down WHAT she asked WHOM and WHEN and to keep those notes which very well could be quite useful in the future. She said she will.
Her husband has since told her to stop asking the staff so many questions because they are tired of her. As you can imagine, that’s not working for me either.
Saturday, one of Niko’s messages was: “Can you let me know if you have time for coffee next week? I want to talk with you again more and need power charge for next step.”
I’m just a message away I told her.
I will do everything within my power to help this young mother hold onto the rails and get across this bridge of fear, helplessness, and confusion. There is nothing I’d rather do.
It’s Monday. Whatever you’re doing for yourself or someone else give it your all.
Make it rock!