Disclaimer: This is a difficult read. It was more difficult than you can imagine to write. This is the first time that I have ever written this story in full (it will be published in a charity newsletter) but I hope you'll read it & pass it on because there is an important message for any expectant parent.
In September of 2009 Hurricane Ike made it's fierce landfall in Texas, leaving most Houstonians without water or electricity. It was a tough time for Houstonians for weeks to follow while power was being restored to homes in a city of 4 million. We were lucky, as our electricity was restored the day after the hurricane. However, you couldn't get out, shop, or do anything.
What's interesting about these situations is that there is a baby boom nine months later & they are deemed "Hurricane Babies". I guess when the power is out, and you're stuck at home, there isn't anything better to do than procreate.
My husband, Joe & I were thrilled to learn that we would be having a Hurricane Baby. Our second child was due nine months later - almost to the date of Ike's landfall.
Here I am, fat as can be, June of 2009, ready to give birth.
Friday, June 12, 2009 was my due date. I was scheduled for a c-section on Monday, the 15th, but I begged my doctor to allow me to go into labor on my own (it's rare to find a doctor in Houston that will allow you to have a vaginal delivery after a previous c-section). On Saturday afternoon I started feeling contractions. By 11 pm, after a day of tracking my contractions, I was certain this was the real thing. I went to the hospital & it was confirmed. I was so grateful to have the chance to go through 11 hours of labor before being wheeled into the OR.
On Sunday, June 14, 2009 at 1 am, Joshua Barish Weisman was born. He was perfect. Ten fingers, ten toes. He had brown hair and blue eyes just like his Dad. He was entirely everything we had dreamed he would be.
We were in heaven. We introduced our 2 year old, Ben, to his brother and had our first photo taken as a family of four.
My mother was there. She hadn't been there for the birth of Ben, so everything seemed as perfect as any birth story could possibly be. I remember my mother holding Josh and seeing the incredible love in her eyes was breathtaking. I was not in great shape after my c-section, and the pain was unbearable. So, mom got a lot of time with her new grandson. She fed him, burped him, held him, stared at him in pure amazement. I can't recall a time that I had ever been so happy. Watching my mother with my son, and seeing the perfect, wonderful love that she had for him is a memory that will be ingrained in my mind forever.
Joshua was checked in the nursery by our amazing pediatrician, Angela Chia, of Fannin Pediatrics that Sunday. He underwent all of the standard newborn screening tests. The next day, as I sat in my room alone with Josh, Dr. Chia came in to check him again. Being the incredible doctor that she is, and recalling her daily visits to the hospital when Ben was born, I was not at all alarmed to see her, though I found it a bit curious to see her in the morning, as she usually came in the evening after her practice closed.
The first thing Dr. Chia did was unwrap Josh from his swaddle & listen to his heart with her stethoscope. She listened, and listened... moving the stethoscope to different positions on his tiny chest, listening intently. My heart began to sink a little.
As she removed her stethoscope, I asked, "Is everything okay?"'
Dr. Chia: "Joshua has a heart murmur."
I breathed a sigh of relief. "Oh, okay. A lot of people have heart murmurs. It may run in my family because I have one & so does my brother."
Dr. Chia: "I'm ordering a chest x-ray and an echo cardiogram of his heart, just to be on the safe side."
I said, slightly surprised, "Okay, let's do it."
I called my husband & mom. I told them what was going on. I talked myself down from the ledge thinking, "This kind of thing is just a precaution. He will come back, and the doctors will say that everything is fine. I'm not going to panic over this." Soon, Josh left for his testing.
An hour later, the phone rang in my hospital room. Joe answered. I watched the color drain from his face as his head fell into his hand, listening carefully to the person on the other end. Now I was afraid. "What's going on? Who is it? Joe! What's going on?"
Joe handed me the phone. It was Dr. Chia. She was calm, but I could hear the the uneasiness and fear in her voice. "Amy, Joshua is sick. There is a problem with his heart. He will not be coming back to your room. He is going to the level 3 NICU to start emergency medication to keep him alive. There is a risk with this medication that he could stop breathing. I've called Texas Children's Hospital (TCH), and they are on their way to get him because they can handle his case. He has a coarctation of the aorta."
It was, and remains, the worst moment of my life. I had to write down and ask her to spell this deadly condition. I couldn't pronounce it. As I hung up the phone, I paced my room like a caged tiger. Joe & I called our mothers & they were on their way. I paced, I cried, I wondered what to do. I needed to get to Josh.
If we would lose him, it had to be in my arms. I was terrified thinking that he would die in a nurse's arms, or lying in a warmer. He was without me, Joe, or my mom. Strangers were frantically trying to save him, and I had no idea where the NICU was or how to get there. Finally the Chief of Neonatology at Women's Hospital came in. He explained Josh's condition again, and also that they could not handle the severity of Josh's case there, and he would be transported to TCH, down the street.
He insisted that I be in a wheelchair because I was a post op patient. I hated that stupid wheelchair. I didn't want to be slowly wheeled to my son. I wanted to run like hell. I was at the mercy of the chief neonatologist, as he lead us through what seemed a never ending corridor, up and down elevators, to a small hallway, with a security door. We were buzzed into a small room where we scrubbed in and were cloaked in surgical scrubs. I was finally wheeled to my son's bedside. I got up to find that Josh was already covered in tubes, wires, leads, and my worst nightmare was playing out before me.
I frantically signed release paperwork that I did not read, to allow his transport to TCH. My mother arrived as emergency personnel began his preparation for transport. They needed us to understand that though he was just going down the road, he could die in the ambulance. No one was allowed to ride with him. We said goodbye to Josh. When we arrived back at my room, Joe's mom, Jackie was there. As I heaved my heavy body from the wheelchair, she held me as I sobbed. I could feel the terror in her embrace.
Joe & Jackie left to follow the ambulance to TCH. Mom & I paced. We paged my OB/GYN. Mom asked if I wanted to call my sister, Lauren, in Dallas. I couldn't do it. I couldn't bring myself to tell her that her brand new nephew was critically ill, and that we may lose him before she ever had the chance to see him. Mom said, "She will want to come down. What do you want me to tell her?" My sister needed to get on a flight to Houston. I wanted her to see him before the unspeakable happened.
We made more phone calls. Truthfully I can't remember who called my Dad. I called my sister-in-law. As I told her the very little information I had, she began to cry. She was frantic. They live in a remote town Pennsylvania, and there was no possible way for them to get to Houston. As I hung up the phone I knew that I had left her just as terrified and confused as I was.
I left Women's Hospital against medical advice to be at my son's side. My OB/GYN, who had been my doctor for many years, understood why I couldn't stay. I had incoming calls from family, normal "Congratulations! How are you & the baby?" calls. I sobbed into the phone telling people what was going on as my mother raced to pack up my room.
When we arrived at TCH, Josh was in the level 3 NICU, the highest level of intensive care at one of the leading pediatric hospitals in the world. TCH cardiologists had performed their own chest x-rays, echos and blood labs. We were waiting for the cardiologist on call to come speak to us. As we waited, I sat next to Josh's warmer. I begged God not take my baby. I asked the nurse about all of the lines, tubes, leads, and IVs. I needed to know what it all was. What it was for. But what I needed to know most is if Josh would live.
My family was begging me to stay in the wheelchair as my legs became more visibly swollen with edema. I wanted to scream at them to shut up and stop trying to make me sit or put my feet up. How could they think of anything but Josh? I know they were doing exactly what I would have done with a family member in that situation, but at that point I was ready to send that wheelchair sailing to the sidewalk three stories below.
By 11pm my sister arrived in the NICU, suitcase and all. The emotion in her eyes could not have been more heartbreaking. I know she tried to hold back tears & tried to be strong for us. Finally the cardiologist arrived. She sat next to me, and Joe, mom, Jackie & Lauren gathered around to listen. She explained that there were more problems with Josh's heart than the coarctation.
She drew a picture of a normal heart. Then a picture of Josh's heart. She explained that he had a very rare condition called Shone's Syndrome. She drew four areas of malformation on the left side of Josh's heart. His aortic arch looked like a straw that had been smashed closed. His aortic valve had only two leaflets instead of the normal three. There was a narrowing of his mitral valve, aortic valve, and his left ventricle was smaller than it should have been.
Over the next week we waited at Josh's bedside. Our rabbi came to be with us. Our family came to see Josh. It was not an easy sight. He was moved to B pod which is known as "Cardiac Row" in the level 3 NICU. The nurses at TCH were amazing. Nurses Kristi & Holly were his night nurses, who I left my son with to go home & get a few hours of sleep, and remind Ben that he still had a mom. When we were there, we waited outside the NICU for what seemed like hours while they administered PICC lines, Central lines, Arterial lines, and a variety of other daily procedures.
We knew the exact time at which the cardiologists made their rounds, and waited as they discussed Josh in what seemed to be a foreign language.
Two doctors always stayed after the throng of cardiologists moved on to their next patient. Doctors Sarah Stone and Scott Macicek explained what was going on in a language that we could understand.
Kristi & Holly were also there to explain things to us. Holly was the first person to let me help bathe my son. Kristi was with me the night before Josh's surgery. She held me as I cried when a baby on the next pod over died in his mother's arms. I will never forget the sounds of that mother crying as she held her baby and watched him go. It was primal, it was horrific.
Joshua had his first surgery to repair the severe coarctation of the aorta at just one week old. When his surgeon declared everything a success, we took the elevator up one floor to the CVICU.
Joe stopped me. "What? Let's go see him." I said, wondering why we were stopped in the hallway after having scrubbed in. Joe said, "You need to prepare yourself." We have a family friend who has gone through heart surgery. Apparently he called Joe to let him know that it would not look good when we went in to see Josh after surgery.
There is nothing. Nothing. That will ever prepare a parent, or any human being with an ounce of compassion for what we saw. Josh lay lifeless on his warming bed. He was gray, he was intubated and honestly, there was nothing about his state that indicated he was alive. As horrific as things had looked in the NICU over the last several days, this was far worse. It was deathly silent, the only audible sounds, were that of the machine pumping oxygen into my son's lungs. There was a morphine drip, foley catheter, and a variety of new lines that I was not familiar with.
After a long, hard fight, Josh was able to come home, miraculously at three weeks old, just in time for the 4th of July.
Talk about Independence Day.
For the next several months we were in and out of TCH for check ups, echos, and Josh was admitted on a few occasions. We were watching and waiting to see if his aorta, which was still had some significant stenosis, would grow with him, or if he would need another surgery.
I got use to being at TCH. I knew my way around all the cardiac floors & knew where the easiest parking was. It was a home away from home for Josh's first year. At 7 months, Dr. Macicek had to deliver some bad news. Josh's aorta was not getting better, rather it was becoming worse. Doctors Macicek and Niche told me that Josh would need another surgery.
This time, instead of a posterolateral thoracotomy (a surgical procedure to gain access to the heart from the back, with an incision just below the left shoulder blade), Josh would need open heart surgery. My heart sank. I imagined the heart lung bypass. The thought of Josh's heart being stopped for hours flooded my mind. The thought of the surgeon trying to restart his heart after the delicate repairs were completed invaded my brain like a cancer.
When I imagined a heart surgery prior to Josh's heart surgeries, I thought of surgery on something the size of my fist. I quickly realized that this was not a surgery on an adult sized heart. This was surgery on a tiny heart. A heart the size of a strawberry. An aorta the size of a piece of macaroni, that was so delicate and fragile, exact precision was paramount. If sutures tore the aorta, even slightly, Josh could bleed out within minutes... if that long.
I began to cry. I felt terribly for Dr. Macicek. He had been with Josh since the day we arrived at TCH. It had to be difficult for him too.
Just before his 8 month birthday, Josh underwent open heart surgery for another repair to his aorta. Surgeon Jeffery Heinle performed both of Josh's surgeries. He is one of the best congenital heart surgeons in the world. The congenital heart surgery team at TCH, led by Dr. Charles Fraser, is where people travel vast distances to receive world renowned care. This surgery was far more complex than the first. Though the surgery was a success, Josh suffered several complications afterward. He was in the CVICU longer this time, to manage his difficulty breathing and a strider caused by temporary paralysis of one of his vocal cords.
Now, at age 2, Josh is the picture of health. He runs, he plays, he loves the beach, he does everything any other 2 year old child would do. He sports a scar down the length of his beautiful chest, and one under his left shoulder blade as reminders of what he has been through.
I notice people at the beach looking at his scars, likely wondering what happened. I'm always happy to explain it to them because Josh is a survivor. I am proud of his scars for that reason. We celebrate his surgical anniversaries because he is a fighter. We thank God for him everyday. Now, it's hard to believe I ever thought we could lose him.
Josh will never have a normal heart. He still has a bicuspid aortic valve, sub-aortic valve stenosis, and mitral valve stenosis, which the cardiologists watch carefully. We don't know when his next surgery will be, but I know that my son is a fighter, a survivor, and my little superhero.
Josh, we love you, and we are so proud of you. You are our hero. You have fought and survived. You are a true miracle.
This is why I beg every expectant mother to request a simply pulse oximetry test for her newborn baby. This measures the oxygen saturation of the blood. There is no poking, prodding, or blood draws. It's the little red light clip that they put on someone's finger in the hospital. It's cost effective, it's quick & easy. It would mean the difference between life & death for the 1 in 100 babies that are born with a congenital heart defect.