The summer of 2002 started out like any other. Everyone was excited for a couple of reasons. #1 Matthew would be starting school in September, and #2 we were expecting our second child. We were in the process of selling our home and trying to find something bigger as the home we lived in only had 2 bedrooms and with a new baby on the way, we definitely needed something a bit bigger.
Our excitement would be short-lived. On July 12 I was scheduled for a routine 20 weeks ultrasound. My sister had missed so much of my first pregnancy as she was attending university away, I wanted her to come to the ultrasound with me. My pregnancy had been great, no morning sickness, no spotting, no need for concern. Of course, I went in myself initially and she could join us after the technician did all the measurements. Things seemed to be going well and then the technician became very quiet. She was focusing on a certain area and took many more pictures and measurements than I could remember having with Matthew. She told me she wanted to go get the radiologist to come and have a look at something and I asked her if everything was ok. She said she thought so and as she left to get the Doctor, I asked if my sister could please come in. I was getting a little nervous.
My sister came in and the radiologist entered and introduced herself to me. She was a younger woman and immediately I liked her. She was very up-front with me. She said, “Tracey, there is something here. Just give me a couple of minutes to have a look, ok?” Well, a couple of minutes turned into almost 45. My heart was pounding through my chest and I had to pee so bad I thought my bladder would rupture. I could see the screen. I could see my baby moving all over the place, what could possibly be wrong? I was getting a belly and I could feel movement for about 3 weeks now. I wasn’t sick. What could be wrong?
“The problem seems to be with the baby’s bowel.” The Doctor’s voice snapped me back from my thoughts. “It appears as though the bowel is located outside the abdomen.” WHAT??? That’s not right. That can’t be. A million things started going through my mind all at once. First and foremost was that my husband should be here with me for this, however, my sister is a nurse, she’ll know what to ask and she’ll be able to explain all of this to me. The Doctor suggested I get up and go to the washroom and then we could talk.
In the two minutes that I was in that washroom by myself I took a few deep breaths and decided that I was going to listen to what had to be said. Perhaps this wasn’t so bad. Her voice didn’t sound too “end-of-the-worldish”, so let’s just see where this is all going to go.
The condition is known as Gastroschisis, which is basically a hole in the abdominal wall. It is fixable. That’s all I needed to hear. Nothing else mattered – it is fixable. She wants me to go to the children’s hospital in Halifax (4 hours away) for further testing, though. No problem. She explained that the u/s equipment was better and more delicate in Halifax and it would show us exactly what we were dealing with. Again, no problem. She has an appointment for us on Tuesday (…this is Friday). She explained that when it came time for me to deliver, it would be at the Children’s Hospital in Halifax as the baby would require immediate surgery to fix the abdomen wall and reinsert the bowel. I remember her writing down the directions for us to get to the hospital and she told me that she lived close by and gave me her phone number in case we needed a break for a cup of tea or anything. (WOW! How nice was that?)
The one thing she did ask me to do was to please stay away from the internet for the weekend (I think my sister may have asked her to say this as my sister knew I would be researching this all weekend). She made me promise her that I would, and I did. By waiting until I got to Halifax to find out exactly what the issues were I wouldn’t have myself all worked up by reading information that may or may not pertain to my case at all. What I didn’t know couldn’t hurt me. This radiologist was wonderful and I couldn’t thank her enough. Now to go home and tell Mike.
We are not the type of people to sit and feel sorry for ourselves – it’s not going to change anything. We talked a lot on the weekend of possible scenarios that we may be faced with but decided that whatever would be would be and no amount of worrying on our part this weekend was going to change any of that. We enjoyed our weekend with Matthew, informed our families (and our family doctor) of what was happening and headed to Halifax Monday at noon time. We’d leave as soon as our appointment was finished on Tuesday. We’d be home to put Matthew to bed on Tuesday night.
This was the first time we had any dealings with the Children’s Hospital in Halifax (The IWK). I could easily tell why it was so highly recognized. The staff at the Fetal Assessment Unit were amazing. They explained that I would be having an ultrasound and then I would have a consultation with the head of the Unit, who would explain the results and outline the course of action for us. The first thing that amazed me was that I didn’t have to drink any water for this ultrasound. The equipment is so sophisticated that my bladder did not need to be full for them to see the baby. Awesome! The second thing that pleased me was that hubby was permitted to be with me from the get-go.
My enthusiasm was unfortunately, short-lived. The events that transpired over the next half-an-hour would change our lives forever. The ultrasound technician didn’t waste any time doing her thing and after about 10 minutes went to get the Doctor. He came in and looked at things for about the same amount of time and told us very point blank that things were much more serious than first anticipated. Not only was the baby’s bowel exposed, but all lower internal organs were exposed as the abdomen wasn’t closing over at all. There were also issues with the size of the lungs and the heart size. Scoliosis of the spine was also evident as were extra digits on one hand and foot. The baby would stay alive as long as I carried, but there was less than a quarter of a percent change that survival outside the womb would be possible. The extent of the condition was too grave. Simply put, there was nothing that could be done to save our baby.
The baby suffered from ABS (Amniotic Band Syndrome). Basically the amniotic sac developed a tear and the tear caused that part of the sac to almost “shred” and attack the baby. Normally, the shredded sac will attach to the umbilical cord, or digits or limbs. In our case it attached to the umbilical cord at the base of the baby’s abdomen and a hand and foot. There is a greater chance of survival with children born from the condition. Death of a child is uncommon and noted only in the most severe cases.
He explained that even though the baby would continue to grow and move inside me as the pregnancy continued, the added stress on my uterus could possibly be too much for my body to handle. As the baby grew, my life was actually in jeopardy and he strongly advised delivering the baby immediately to avoid and unnecessary trauma to me. When Mike heard that there was even the slightest possibility that carry to term could put me at risk, he made the decision. We had to do this now. We had a 5 year old boy at home who needed his mother. If there was no chance that the baby was going to survive regardless of whether I carried to term or not, he couldn’t take the risk of anything happening to me. It my head, I knew he was right. My heart however, was another story.
We left the ultrasound room and met with a nurse from the Fetal Assessment Unit who sat with us, talked with us, cried with us. She explained how everything was going to work. Because of the size of the baby and the fact that I was over 20 weeks, they had to induce labour. I would have to deliver this baby. This could happen as early as the following day. My head was spinning, I felt like I was going to be sick and I couldn’t remember half of what we talked about. All I could think about was having to call our family, 4 hours away and tell them that the appointment I went to Halifax for has turned into so much more. I came to Halifax pregnant and I would be going home with nothing. During the time we spent with the nurse, there was paperwork we had to take care of. In the event that the baby was born alive, we had to do birth-certificates and death-certificates. She explained that the odds of the baby being born alive were very very slim. The trauma of going through the birth canal would be more than the baby could handle, but these things had to be done – just in case.
We left the hospital feeling numb. We went back to our hotel room and started making phone calls. My parents (with strict instructions to try and keep everything from Matthew until we arrived home), Mike’s Mom, my sister, and our closest cousins and friends. We cried and we cried. But we knew it was for the best. Mom and Mike’s Mom wanted to come to Halifax to be with us. No. This was something we had to do ourselves. Once we finished up with the phone calls, we had to go out. Just go get away from things. We went and got some dinner, and with not being prepared to stay in Halifax, we had to go buy a few things to get us through the next couple of days. We spent the evening talking and we realized this was the first thing that has happened to us since we were married 11 years previously that we handled 100% by ourselves – just the 2 of us. No parents, no outside influences, nothing. I felt at peace with that. Mike and I were able to deal with and try to come to terms with this on our own before we headed back home to face everyone. We were back at the hotel room and in bed early. Tomorrow would be a long day.
We arrived at the hospital for 10:00. Once the paperwork for admittance was done, we were back at the Fetal Assessment Unit and more of the procedure was explained to us. We were taken to our room and introduced to our nurse (she was assigned only to me), and the other nurse who was there for the baby. There was another room right next to my room that was a sitting room, just for us. We were free to come and go as long as I felt comfortable enough to do so. They made us feel so at ease and so at home. The staff were simply wonderful. Soon after we were settled, we were introduced to the Doctor who would induce me. She was a very kind lady who didn’t leave until she was sure all our questions were answered. At 12 noon they began inducing me. The type of induction was quite simple and painless. There were tablets inserted vaginally every 4 hours. I was told the procedure could take between 24-48 hours. That didn’t thrill me a lot. Once the first tablets were inserted we went for a walk outside on the hospital grounds. It was a gorgeous day and it was nice to be out in the sunshine. We were able to talk with our family at home and checked in with them a few times throughout the day. At 4:00 we returned for another dosage of the medication. By 5pm, Mike was getting hungry and they were bringing me my supper, so he decided to walk down and get something at the cafeteria. In the 10-15 minutes that he was gone, I went from walking around the room to being very nauseated, vomiting, and starting to experience severe cramping. He was shocked, to say the least when he returned to fond the nurses hooking me up to an IV.
Over the next couple of hours I was in active labour. I was not dilating, so it was still going to be quite some time. Close to 8pm a new Doctor came in to administer another dosage. I was in a lot of pain and very uncomfortable. As soon as she finished, I felt like I had to go to the washroom. I was in a lot of pain so they brought a chair over next to the bed for me to use. Once I sat on the chair I couldn’t believe what had happened.
The baby was born. I looked at Mike and simply said, “That was the baby.” He quickly called for the nurses, they came in and he told them that I had the baby while sitting on the chair. They were beyond stunned and somewhat in disbelief. I can remember that time absolutely stood still at that point. I can remember looking up at the clock and it said 8:00. Suddenly there was a lot of commotion around me, but it was like I was watching it all on a screen. I focused on Mike, who was handing scissors to one of the nurses and I said “Leave it to me to give birth to a baby in a portable toilet.” Of course, they had to be careful when cutting the cord and getting the baby and then trying to get me back into the bed. I can’t do anything the easy way. Two of the nurses went with the baby while the Doctor examined me and together we determined the best thing might now be for me to go and have a D&C to make sure everything was cleaned out.
We decided the day before that Mike would see the baby. If he thought I could handle seeing the baby, I would and if not I wouldn’t. He knew what I would be able to handle. While the Doctor was with me, Mike went with the nurses to be with our baby. Shortly after, Mike returned holding the most precious, most tiny, most perfect looking baby girl in the palm of his hand. She was born an angel. She was a mere 7 inches long and weighed half a pound. He handed her to me and again, time stood still. She was absolutely beautiful. She looked identical to her big brother. She was Emily Ann Rose. She was our girl. Soon I was taken down to surgery and Mike kept Emily with him while he made phone calls to the family at home. It was only about an hour before I was returned to my room, my husband and my baby girl. A minister arrived and spoke with us for the longest time, but I was really out of it from the anaesthetic, and as much as I tried to pay attention, I knew I was dosing in and out. Finally, it was just the 3 of us for another little while and then I dosed of to sleep for the night.
The next morning I was given the all-clear to leave after it was determined that it was safe to do so. They suggested that I stay in the city for one more day just in case I had any complications with bleeding. We left and went back to the hotel where we both slept again for hours. We decided we would stay for the night and head home in the morning. We spent the better part of the evening again on the phone, talking with our family at home.
We had to explain to them that we left Emily at the hospital. It was our choice. It was as much a teaching hospital as it was a practicing hospital and I wanted the staff to do whatever testing they could to determine what happened with our little girl. Perhaps they would be able to find something that would save some other family from ever having to go through they horror we went through the previous 36 hours.
We didn’t leave without memories of Emily. The staff at the hospital put together a beautiful Memory Box for Emily which contained the little outfit she was dressed in, as well as the exact same outfit without the staining on the front where her little abdomen had seeped some fluid through. The little hat she had on her head and a copy of her hand and foot prints were also included. There was literature for us to read on the loss of a child and many resources were provided to us as well. The Box is placed in a special spot in our home and every July 17, we have a
look at it’s contents.
Upon returning home we told Matthew the news. We sat down in our home, just the 3 of us, and had a chat. I started explaining that the baby was sick and the Doctor’s tried their very best to do what they could. He stopped me in mid sentences and asked quite bluntly, “Are you trying to tell me that my baby’s dead?” There was no longer any need to beat around the bush. He was understandably upset, but handled things like a real little trooper.
Over the next few days our home was very busy with family and friends stopping by. I was so glad Mike and I had a couple of days to come to terms with all this. It made it a little easier when it came to having to explain our story so many times. Everyone was so wonderful and meant so well, but I longed for the time when it would be just the 3 of us again.
About a week later we held a Memorial Service for our baby Emily Ann Rose. It was so beautiful and so appropriate.
Even though she was not with us, she couldn’t have been closer. We had our Angel in Heaven. We had our boy here with us. It was time to let the healing begin. It was time to try to enjoy the rest of our summer. Our big boy would be starting school in September. Something to look forward to, for sure. Or would it?
Until next time…