This is a long long post.
Today, brought a whole new incredible experience. One that I will always treasure. I was invited by our medical team to speak at a Pediatric Cardiac Care Symposium. There were lectures all throughout the day from cardiologists and surgeons, detailing the various surgeries and procedures done on heart kids. The audience alternated, as medical staff had to go to their patients, but for my speech there were about 100 people. They comprised of doctors, surgeons, nurses, physical therapists, and possibly other appropriate medical staff. They were from Hadassah Ein Kerem, and Hadassah Har Hatzofim.
Our surgeon, Dr. Erez spoke quickly about the necessity to provide heart families with support after they have left the hospital. Then our phenomenal nurse, Yifat, spoke about her job and role in helping heart families. I was introduced and I got up to speak.
Here is more or less what I said with a slide show:
Hi. My name is Shoshana __________. I am a mother to three children: Mechal, Tzviel and Tehilla. I work as a graphic designer.
I'm here to speak about Tehilla, my youngest. She has Hypoplastic Left Heart Syndrome (HLHS). This is the story about how we went from here (first picture of her from the NICU), to here (recent picture).
This story actually starts before Tehilla's birth. The contrast of what went on before Tehilla's birth, plays a huge part in Tehilla's "success story".
When I was 15 weeks pregnant, I went for my “Skirat Mukdemet”. My entire world completely changed with the words, “I do not see 4 chambers of her heart.”
Professor Rein was unavailable so we were sent to Modiin to have an echo done. There we were given the diagnosis of HLHS. There were many words and terms thrown around, and honestly, most of it went over my head. Funny enough, I'm pretty sure I failed the 10th grade science section about the heart.
I remember the cardiologist saying, “You will have to make a choice whether to abort the pregnancy or not. Some people abort and the others throw their hands up to G-d and pray."
We went to a different hospital and met with a different doctor at week 19. The doctor refused to give us information, and when we pushed to understand, he said that we need to consider quality of life. When we asked him what that meant exactly the only answer we got was "No Sports."
In fact, the only piece of information we were given was, that our baby had a 20% mortality rate.
We were devestated and wanted to understand more about HLHS. This was when I went online and found a facebook group called Heart Mamas. There I connected with 2,500 mothers of children with heart defects.
While writing this speech, I actually found my original post:
"Today, we had the followup fetal echo. I was hoping that the appointment would give us some indication of what to do. I was hoping they would tell us that this baby's HLHS looked good on the spectrum and that with surgery, the baby would be okay. Even telling us that the baby didn't have a chance and that we had no choice...would have been better than this. They confirmed HLHS. The doctor spoke about the surgeries needed, but explained that even with the surgeries, this child would never have a whole heart. This child would never be "normal". That we had to consider the quality of life. That we had to consider our two other children and that our lives would revolve around this baby. And that we had to make a decision whether or not to terminate the pregnancy. We have to meet with a genetic counselor who is supposed to talk it through with us. How on earth are we supposed to make this decision? We tried so hard to get pregnant with this baby. We want this baby so badly, but we don't want this baby to suffer and not have a life. I need so much support right now. I need to hear from mamas who had HLHS diagnosed during pregnancy. I also need to hear from heart mamas that terminated. My heart is broken right now."
I received 84 responses. I received many many pictures. Pictures of HLHS kids smiling and happy- many with a notable scar on their chest.
This really confused my husband and me. These kids look great! Was it that our daughter's HLHS was more severe or were we not getting enough information?
The more we thought about our appointment, the more confused we got. Why would the doctor say 20% mortality rate, when you could say 80% survival rate? Clearly, this was the mindset of the doctor that we saw.
We realized that we needed to go for a second opinion. We met with Professor Rein. It was a great appointment. Usually an appointment would last 10-15 minutes. Professor Rein sat with us for 45 min. My husband and I asked well over 200 questions, and Professor Rein patiently answered our questions and drew us many diagrams.
It's important for me to mention that he did not give us a better picture, just more information. In fact, what he said was that the baby had a 45% chance of living over the age of 5, from that point in my pregnancy. He explained that her quality of life, if she lived, could be relatively normal.
We realized that it was basically a 50/50 chance that our daughter would live, but if she did, she could have a relatively normal life.
There was one other problem, that he saw in the echo. Her ductus in her heart was completely closed and this made her inoperable.
We were told to come back four weeks later for another echo. We came to Hadassah and had the echo. It showed that her ductus had opened completely on it's own. We took this as a miracle and decided that we were going ahead with the pregnancy.
The rest of the pregnancy was very difficult emotionally not knowing what would happen.
On October 1, 2013, Tehilla was born via c-section. She weighed 2.800 kg and was immediately taken to the NICU.
Tehilla had her Norwood surgery with the Sano modification two days later.
Before Tehilla's birth, many heart mamas advised me to create a blog. It would help family and friends to keep updated and help us, so we wouldn't have to be on the phone constantly.
I started a blog when I was pregnant with Tehilla and only published it when she was born. It helped our family and friends stay up to date, but it also attracted people from all over the world. We started getting messages from Japan, Italy, Spain, Brazil, Canada, Belgium, U.S. and England. People were praying all over the world for Tehilla. They were lighting shabbat candles for her and doing acts of kindness for her.
The blog had inspired thousands of people. But all of these people were also supporting us. They were strengthening us, during the hardest times.
I started getting messages from Jewish families with children with heart defects. Some with HLHS, some with other defects. They offered advice on how to handle the hospital stay, or just send supportive words. Today, the blog has had over 160,000 views
Tehilla slowly recovered from her Norwood surgery. During this time, I was basically living in the hospital.
It was always very encouraging when I would walk into the room, and a doctor or nurse, would immediately give me an update.
As a parent, you really struggle watching your child recover from surgery. It is completely out of your control and there is nothing that you can do to help.
Having these little updates and explinations really helped me to cope with the situation.
When I was pregnant other heart mothers told about Sisters by Heart. It's an organization based in the U.S. specifically for HLHS families. They have a website that provides a lot of information on surgeries and procedures, as well as inspiring stores about children just like Tehilla.
One of the amazing things that Sisters by Heart does is send care packages. We received a huge package. Inside was a blanket that had been donated by a family that had a son with HLHS, who had unfortunately passed away. It had a pacifier that helped babies learn the sucking reflex. It had bottles, toys for my other two kids, something for my husband and I, and many more things.
Having these items with me in the PICU reminded me that other families had been through this. Even the ones that lost their kids. It reminded me that I wasn't alone.
Tehilla continued to recover nicely. She was taught to suck a pacifier and then slowly taught to bottle feed. We had some issues with her gaining weight.
Tehilla had been in the hospital for almost a month. During that time, we were visited frequently by Dr. Erez, of course, and Professor Rein. Dr. Golander would come in frequently and always made time for our questions and concerns. We quickly established a very good relationship with Dr. Golander.
Tehilla was finally allowed to go home. It was the most terrifying night for me. I stayed up and watched her sleep the whole night. I was scared that something would happen. I chatted with many heart mothers that night and was reassured by them. I finally got some sleep, a few days later.
Tehilla continued to do well and develop at home. However, we were in the ER at least once a week.
Some times it was because her saturations were low and she was blue.
A few times, it was because her scar looked terrible.
Meanwhile, my blog had caught a lot of attention and people were really interested in Tehilla's story. It had created a network for Israeli and Jewish heart families.
Interstage, meant staying away from the public and even our friends, to protect Tehilla from sickness. We were isolated, but, at least Tehilla was healthy.
Once day, I got a weird email. It was from a man named Neal who started an organization called Lev Leytzan, an organization of medical clowns. He asked if he could come visit us at home. At first, I thought this was very bizarre. I didn't respond for several days. But the more I thought about it, the more I realized that it would be a fun experience for my kids. I replied and we set up a day over Chanukah for him to come.
That day arrived and there was a knock at the door. We opened it and found a clown standing there. And then another clown. And another and another. Suddenly our home was filled with about 30 clowns. There were clown noses flying around and everyone had a great time.
Tehilla continued to grow and develop nicely. When she would get sick, it would be more exasperated then a normal child and very hard on her.
With any question or problem, I would call Yifat. She would consult with Dr. Erez or Dr. Golander. I also spoke to my heart mothers frequently.
They provided support but also answers to questions, that even our doctors couldn't answer.
An example of this was with the RSV shot. After Tehilla had her first RSV shot was very sleepy. It got to the point where we couldn't wake her up. We went to the ER. They performed all kind of tests and consulted with the cardiologist on call. They couldn't explain it. It's not supposed to be a side effect of the RSV shot. But then again, there is no normal for a baby like Tehilla.
When I got home I once again went on Heart Mamas, and got 15 responses from parents that experienced the same thing. This was very reassuring.
At 5 months old, Tehilla was supposed to have her Glenn surgery. It's the 2nd stage for HLHS children. But by the catheter, we saw that she had very small pulmonary arteries. We met with Dr. Erez and made a backup plan of a BT shunt.
In fact, that was what happened. During the surgery, Dr. Erez felt that her pulmonary arteries were too small. She had the BT shunt.
She was in the hospital for only 8 days.
During that hospital stay we noticed that Tehilla was starting to develop a fear of doctors and nurses. In fact, this is very common and what I have learnt from speaking to thousands of heart parents, is that a large percentage of these kids later develop sensory issues as well.
I would like to make a suggestion, as a parent. If there is a task that needs to be done, that does not require medical knowledge: such as cleaning an area before doing a blood test, or removing an oxygen line, things like that- I would suggest that you ask a parent to do it. Not only will you be giving the parent something useful to do, which will make them feel like they are helping in some way, but it will limit contact with pediatric patients.
After our last surgery, I wrote a blog post about an experience that I had. I was waiting after an appointment with Dr. Golander and saw a small baby being wheeled into the cardiology offices. I could tell by how the woman said, "Todah Rabbah" that she was an English speaker. I watched her sit uncomfortably, with a look of shock on her face. I asked her what her story was. She said, "I don't know. I just don't know. We were supposed to be discharged and then they said they heard something. Now we're here. I just don't know."
I sat and reassured her that she was in good hands and that the doctors and surgeons, who I hope she will never need, are incredible.
I had seen this situation before and had experienced it myself. It really sunk in the point for me, that we need an organization in Israel to provide support to families of children with heart defects.
There needs to be a place to go to find support, like I have found in the past from other heart parents.
A place that parents can go that provides information. It pains me to say it, but at the time of my pregnancy with Tehilla, there was no information online about HLHS in Hebrew. If the only language that I spoke was Hebrew, than we would have terminated the pregnancy. Yifat has been working hard to put information online, so that more is available.
My entire experience was what inspired me to start an organization called Little Lev. The goals of Little Lev are to provide support and friendship to Israeli families with heart defects and to provide information in many different languages.
I posted on my blog, asking for people to donate their professional skills and help get a website up and running. The response was incredible. I worked with two other heart mothers on creating this website. Our website offers information and tips in English and Hebrew. We hope to expand to several other languages.
We have also started to hand out care packages to heart families. After seeing the impact it had on my family, we realized how important it is.
The main purpose for me to speak here today, was to explain what a heart family goes through. The other purpose was to tell you about Little Lev.
I'm sure that as doctors and nurses, you understand that you are treating not just a patient but an entire family.
By telling parents about Little Lev, by handing out our cards- you will be helping families find the support they need.
Today is Tehilla's birthday. She is one years old. Our hopes for her are that the medical world can keep up with her as she grows. She still needs a Glenn and Fontan surgery.
Thank you so much for you time and thank you to our doctors and nurses that have helped us with everything.
That was my speech. Nearly everyone in the room was crying and laughing throughout my speech. A few nurses came and hugged me and thanked me for sharing our story.
I was very nervous before me speech, but once I started talking, I calmed down. From the reaction I got, it really sunk into me, how I was representing all families of unwell children. I was the voice for all of these mothers. I don't mean this in a bad way, but when treating children is your job, I think that frequently the actual emotional needs of the family are forgotten. There is a goal in mind- help this child survive. Anything else seems trivial.
I really see how our story impacted these medical professionals. I would gladly do this again, and hope that I get the opportunity in the future.
Our nurse Yifat recorded my speech. When she sends it to me, I will try to upload it.
