Early Detection matters

 

Josh a few days old, he had so much fluid on board that his tummy actually ripped because the skin stretched so much. To this day he bares the scar. He was 4'11 lbs, when he was born, he got a lot heavier and then and 6 weeks later when we brought him home he was done to 4lbs.

When you are enveloped in the world of CHD you hear a lot about early screening tests, and how they save lives. I had never heard of a pulse-ox and certainly didn't have one. I was however, lucky enough to have an ultra-sound that detected an abnormality (a two vessel cord instead of the normal three vessel cord), this had the doctors sending me for follow up tests and it was those tests that led them to discover Joshua's heart defect. By knowing about Joshua's heart defect we were able to take measures to save his life. Joshua almost came on January 1st 2008 (He was due in March). Thankfully, we knew that if he was born that early with a heart condition he wouldn't make it. As it was he still came three weeks earlier than the doctors wanted to ensure his viability. The following is the recount of the day he was born, written in the months following his birth.

"When I woke up on January 31^st 2008, I went about my normal morning routine with Tim, but before he had even left for work I had to go lie down again. I didn’t feel right; although I couldn’t name the problem I thought if I just rested I would be okay. By one o’clock that afternoon I was worried, I hadn’t felt the baby moving for a couple of hours, despite trying to wake him up with sugary drinks and chocolate, even throwing in some very loud U2 music for him to listen to. Nothing was working, and at around 2 in the afternoon I began to cramp. I phoned the church, but Tim was in a meeting and I didn’t know if this would classify as an emergency or not. Although looking back that really is as stupid as it sounds.  I left a message asking that he call me as soon as he could and I sat waiting with the phone in my hand. I phoned twice more before the receptionist finally asked ‘is everything okay? Is this an emergency and I said very quietly that I thought it might be”. Tim was on the phone within minutes. He had the car at the office so he felt it would be faster if I took a cab to the hospital and he would meet me there.

Having a plan helped, I got up, got my coat from the closet and my purse from the hook and I called the cab company. The wait for the cab was probably one of the longest of my life. When he finally got to the house I locked the door and calmly waddled to the car. I explained that while this was not an urgent situation I was indeed pregnant and I did need to get to the hospital in the timeliest manner he could manage. I smiled when he simply responded with ‘Oh my God!’ and stepped on the gas. I had to reiterate a few times on the drive that I was not in labour and he didn’t need to break laws to get us there. He almost didn’t want to take my money; he was so busy trying to get me out his cab that I had to remind him that I owed him twenty bucks.

I got into the hospital and went to the 7^th floor, where they have the labour and delivery which brings me to an entirely separate point of why they make pregnant women who are often in labour when they are headed to their department go all the way to the 7^th floor? I understand that the first floor needs to be ER but why not have maternity on the second floor? Why do we need to go to the 7^th floor? That is a lot of floors when you are cramping and scared! When I finally reached the triage area they informed me that I had needed to get admitted, which happens on the first floor. I could have cried, and while I don’t remember it very well I think I might have done so in the privacy of the long elevator ride back down to the first floor. As I turned the corner to admitting I saw Tim standing there waiting for me, I can’t tell you how wonderful it is to see the face of the man you love, your partner and the parent of the child who’s life you are so afraid for standing in front of you, offering his arms to you. Never have I felt so safe, never has it taken so much courage to leave that safe place. The funny part is that it was around this time that the cramps had stopped and I began to feel very silly. Had I dragged Tim out of a meeting, worked myself up to a frenzy, almost got a cabbie arrested for reckless driving and all of it for nothing? Would the doctors look at me and see a panicky new mother to be and dismiss me as silly? I was hoping that this would be true but at the same time feeling very stupid at the same time.

We got admitted and made the trek back up to the seventh floor. The triage nurse came in and hooked me up to a monitor and quickly ordered that an Ultra Sound machine be brought in to my bed. They did a scan and then called in the doctor. Not our usual doctor, this one was named Doctor K and he was much more uptight, he seemed to think this was bad, and he had me come to another machine so that they could have a better look, but again, he said it doesn’t look good. ‘We are going to have to take this baby’, the flow on the cord was going backwards, the baby was starving because the placenta was failing him.  I looked at Tim in shock, this was just unreal, we had had an ultra sound just the day before and they hadn’t seen anything wrong. What had happened?

I didn’t know Dr. K. This was my first interaction with him and he was fairly high strung, although to be fair I know him; I have since had a chance to get to know him after he started coming to our church and he isn’t that way normally, it was what the situation called for. At the time though it made me nervous, I wanted my calm Dr. R to come in and give me his advice, if he, in all his calmness agreed with Dr. K then I would agree to the procedure. Even before the thought was fully formed Dr. R came in, he had been on his way home when word came to him that we were there, he spoke with Dr. K and he agreed. Josh wanted to join us now and we couldn’t wait. The surgery would happen, regardless of the outcome. Joshua would be born that night. Tim made phone calls to parents, I sat paralyzed with fear, the doctors had said he couldn’t come early hadn’t they? All the paediatricians’ had agreed that with Josh’s heart problems that he wouldn’t survive an early birth, what did all of this mean? If Dr. R was no longer calm, what did it mean for Joshua?. People were surrounding me, prepping me for surgery, asking questions about when I had eaten last, what allergies I had and any other number of other questions. After our parents were called Tim was stuck at the foot of the bed, he tried unsuccessfully to reach me but when he saw my fear he got annoyed and yelled, ‘let me get to my wife, she’s scared.’ I have had a million moments in our marriage where I have felt safe and loved but this one stands out so clearly to me. It was like he was my own knight, slaying dragons to get to my side and protect me. A pediatrician came in and started talking about risks, it was pretty dire. With his heart condition his survival chances were low, if he had any to begin with. All I could think about was the doctor who had warned me to bring a camera when the baby was born because it would most likely be my one chance to have a photo of my son. My heart filled with panic, I had not brought a camera. I needed a camera. It is amazing what happens in the face of fear, the things you think about.  They gave Tim the consent forms to sign and started to wheel me away but Tim stopped them and asked for a moment to pray with me. I don’t remember the prayer per say, but I do remember feeling peace. This was it, our moment of truth. Miracle or no miracle we would find out tonight."

Josh was born at 8:50 PM on January 31st 2008. He was blue and not crying. The nurse held him up briefly for me to see and when I looked at him his eyes were open and we made eye contact with each other. I didn't see him again until almost midnight, after he had been stabilized enough to move to Sick Kids.  When I think back on those moments of not knowing if he was alive or not, when I remember that empty feeling when I touched my abandoned womb, I still tear up. However, when I think back to all the things that led us to that surgery, that day. The cramps that led me to the hospital, the previous hospital stays where I was injected with steroids so his lungs would grow, the knowledge of his CHD and the preparations that were made for his delivery. I can see how each thing, each person, each prayer was answered. Now, 6 years later I too spout off about early screening because although we didn't have pulse - ox, we knew, and in the knowing we saved our sons' life.