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Here is Avery's story:
Avery has surprised me from the moment she was conceived. It was the first weekend in July 2005 when I found out I was expecting a baby. My very first one. I knew right away that I was having a little girl, although I had to wait until my 19 week ultrasound to confirm it. I remember my 13 week ultrasound. It was the first time I saw a picture of my baby. I was so happy, I cried. I couldn't believe that there was really someone in there!
I felt great through my pregnancy, so I never expected any problems. I was tired, of course, but I didn't have any morning sickness or any other complaints at all. I did everything by the books, staying away from caffeine and alcohol. Nobody really ever thinks there will be problems. That's why on October 19th, 2005 when I was 19 +3 weeks along, I was ecstatic to be going in to find out the sex of my baby. The technician confirmed what I already knew. I was having a little girl! She was taking a long time looking at things, but I assumed it was just because she was a friend of a friend, and she wanted to give us lots of good pictures. Even when she left the room and brought in the doctor, I wasn't worried. It wasn't until they told us that the baby's stomach looked 'a little higher up than it was supposed to be' that I thought we might have a problem. But still, it didn't sound that bad. I of course started crying though. I was confused. What does this mean? Instead of the 3 days it should take to get back the results of an ultrasound, I was told to go home from the hospital and make an emergency appointment with my OB for the next day.
The next day my OB explained what the problem was. My little girl had what was called a Congenital Diaphragmatic Hernia. Because her diaphragm (the muscle under the ribs) had failed to close properly, all of her abdominal contents such as her stomach, bowels and liver, had migrated up into her chest cavity. This in turn pushed her heart over to the right side of her body, and the biggest problem was that it had prevented her lungs from developing normally.
I was immediately referred to a Maternal-Fetal Specialist, as my pregnancy was now considered high-risk. We live in Canada, but discussed going to Philadelphia to have fetal-surgery done. This would mean that my daughter would have been operated on while she was still inside of me. Ultimately, we decided against this option since babies with CDH have an approximately 60% survival rate right now. There are many different levels of severity of CDH and unfortunately, it is hard to tell until after a baby is born how severe the case is. Fetal surgery hasn't really been proven successful, with a 50% chance of the baby dying just from having the surgery. Our chances seemed better if we waited until our little girl was born.
The city that I live in is equipped with a NICU, but not a large enough one to handle the severity of Avery's problem. I had to travel to London, 2 hours away, for appointments before Avery was born. Here, I had an MRI done. This was supposed to tell us Avery's lung to head ratio (LHR) which should have given us a better indication of her chances. A lung to head ratio of under 1 is considered to be pretty much hopeless. A LHR of 1.4 or above is pretty good. From the MRI I had done, 2 different doctors got 2 different numbers. One told me that Avery's LHR was 0.6 and one told me that it was 1.5! These numbers were completely different, and so I was back to waiting again.
I decided to deliver Avery in Toronto, 4 hours away, because they offered a machine called ECMO. ECMO is a heart-lung bypass machine that will not cure a baby's lungs, but it will allow them to rest for a time if they need to. ECMO is apparently rarely used in Canada for babies born with CDH, although it is frequently used in the States. I wanted it available to Avery in case she needed it. I prayed that she wouldn't. But just in case, I wanted every resource available to my daughter. I anticipated an approximate 3 month hospital stay, and then I would take my baby home with me. I had prepared myself for a lengthy hospital stay, and for long-term problems. I did not prepare myself for my baby's death.
I felt so helpless throughout my pregnancy because there was nothing that could be done until after Avery was born. When she was born, she would have surgery to repair the hole in her diaphragm and move all of her internal organs out of her chest and back into her abdomen. Then, hopefully, Avery's lungs would begin to grow. She was happy and active while she was in my belly. She was always kicking and hiccuping. She didn't need to use her lungs in there. She should have stayed until she was 18! At 37 weeks, in the middle of February 2006, I packed my bags and left home for Toronto. Luckily, my aunt lives in Toronto so I moved in with her and my cousins to wait for Avery's arrival. I was due on March 12, 2006. As with many first babies, Avery took her time. I believe that she knew that she was safe inside of me, and didn't want to come out to face the cruel world we live in.
On Friday, March 17th, 2006, St. Patrick's Day, I went into labour at Mt. Sinai Hospital. My labour was quick and very painful. I didn't have an epidural until I was already 10cm. Luckily it kicked in when it was time to push. Avery was transverse (sideways) and her heart rate was rising to high levels so she needed to be delivered with forceps and I had a double episiotomy. When she came though, at 10:17pm weighing in at 6 pounds and 14 ounces, it was incredible! She arched her back, clenched her tiny fists and opened her mouth so wide trying to scream. No noise came out though. Avery had too little lungs. I never did get to hear my daughter cry. My baby was held up for me for a millisecond before she was whisked away by the resucitation team. I cried. I can't believe the emotions that I was filled with. I know she was sick, but I didn't think about that then. I just thought how incredible I felt. I was so full of love and happiness and hope for my baby. Everyone important to me was there when Avery was born and I wouldnt have had it any other way. I'll never forget the pain, but she was worth every second of it.
Since I hadn't been able to see my baby right away, the staff took pictures while they were working on her and brought them for me to look at. The very first thing that I noticed about my baby was her lips. Everyone in my family has those lips and Avery has them, too! I haven't always liked my lips, I will love them forever now. It is amazing that someone can grow inside of you and come out looking just like you!
I was wheeled in to see Avery approximately 2 hours after she was born when she had been stabalized enough to transfer. She was so much tinier than I thought she was when I had looked at the pictures. I got to spend about 5 minutes with her and take some pictures before she was taken through an underground tunnel to the Critical Care Unit at the Hospital for Sick Children. That night I didn't sleep much. I worried about my baby all alone, but had to trust that she was with good people who could care for her.
I will continue the rest of Avery's story in a journal entry, as I have used up too much space here. I wonder if Avery would have been a talker like her mommy?
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