[left:7246a69f97]http://www.cherubs-cdh.org/Album/new/elizia.jpg[/left:7246a69f97]At the 30th week of pregnancy, we found out our little daughter had an important deficiency in her thorax called Congenital Diaphragmatic Hernia (CDH) – (1 in 2500). The doctor’s prognosis gave us only a 20% chance that our daughter would survive. Even after that news we decided to follow through with the uphill battle and having to be at the hospital on a daily basis for meticulous follow ups on our baby’s development.

The bad news just kept coming, and we found out that Elizia was also having problems with her heart. The last two months of pregnancy where plagued with unbelievable ups and downs and the burden of the unknown. However, we were very well informed as to the nature of the problem and what type of treatment Elizia would need at birth. The most important thing we needed to understand was that the hole in her diaphragm was causing her vital organs (stomach, intestines, liver) to push against her rib cage and was preventing the normal development of the lungs. However, it was impossible to determine, until Elizia would be breathing on her own, what type of pulmonary tissue was in place to allow a real chance of survival.

On December 14 we were admitted to the hospital to induce labour. At 3 p.m. my extra-super, beautiful little girl was born, and her vital statistics were quite good considering her condition. Her chances of survival were then upgraded to 50%. The first treatments went so well that when they were ready to transfer her to CHEO, they gave us a 70% chance that Elizia would survive.

CHEO (Children’s Hospital of Eastern Ontario) - During the transfer from the General hospital to CHEO many complications where beginning to arise. Elizia’s pulmonary pressure began to rise and her prognosis was reverted back to the same as before the delivery. The goal in the first 8 to 10 days was to stabilize her pulmonary pressure while keeping a good blood pressure. Since only one lung was present in the echogram, we had to hope that it would be enough to allow future development after the operation. Many medications were administered to her through intravenous to help her get through the critical first few days. She needed to be hooked up to a special ventilator to help her breathe and supply enough air to maintain her vital statistics. One of the essential medications used to prevent her from fighting the ventilator was Pavulon. It would paralyze her and prevent her from suffering too much because she couldn’t breathe normally.

YOYO (ups and downs) - During her 9 days of life, Elizia was a living yoyo as many different levels were attained. The first was at her birth when she showed signs of improvement. Then the first down was when she was transferred to CHEO and was put on a special ventilator. On the second and third day her vitals improved greatly, but on the fourth and fifth things turned worse again. So much so that when an echogram was done on the Monday after her birth (the fifth day), the neonatologist noticed a deterioration of the pulmonary mass which diminished all hope. It was at that time that we realized our daughter would not win this fight. We were then told that if there were no improvements by Friday we would need to make a decision. After the terrible news, we needed to gently prepare our daughter for her journey towards the light. While we were preparing, our little Elizia had a week of great improvement to which point the doctors told us she would make it to the surgery. The surgery consisted of lowering all the organs stored in the thorax and repairing the hole in the diaphragm. The Thursday before the fateful day was the best Elizia had, we could definitely see some major progress.

The last day and the last moments - Around midnight, the doctors on hand were trying a maneuver in the hopes of lowering the O2 levels for the operation. This maneuver turned out to be Elizia’s final rites since her reaction to it considerably increased the pressure of her lungs. The doctors announced to us that that night would be critical and to be prepared for anything. Around 4 a.m. they informed us that Elizia had continued a downward spiral and they were trying to stabilize her but that it wasn’t working. All we could notice was the dwindling numbers of 02 and NO2. I will always remember the multiple critical moments and the decision that we had to inevitably make. The main neonatologist was called and upon arrival I cracked. I understood the end had come.

Everyone who was asked to assist in the final moments was called: family, friends and missionaries. The Elders had graciously blessed us and Elizia the day before not knowing that that she was in her final moments. The time had come to make sure the day would pass in peace, harmony and serenity to accompany our little Angel towards the light. We were told that Elizia would be brought into a private room where we could spend our last moments with her. She was placed on a special respirator that was used to keep her alive. The intensity was at its maximum in this room where Elizia would spend her last moments. Everyone was saying their goodbyes, and I was feeling great enlightenment mixed with great sadness. I felt I had the chance to help this little soul find enlightenment but at the same time my daughter was leaving me. I will never forget those magical moments.

Many minutes later it was time to finally disconnect our little girl and to let her rest in peace. We were informed that when she was disconnected that she would only live a few minutes. And that is exactly what happened. We had just enough time for a final prayer and to sing her a song to accompany her through the passage of her soul. The four hours that followed were precious hours were Mommy held her daughter with love. The first steps of her grieving process.

Today the mourning continues its path, and I am filled with gratitude towards this Angel that was sent from heaven to help me grow and give me strength to realize my new potential. I will never regret anything. Having our Angel for 9 precious days has made me the happiest man in the world.

Written by Elizia’s dad, Gabriel Chicoine (Canada)