Gage Aaron Wade March 8, 2008 – September 25, 2008

The story of our son Gage is a brave, strong and unique one. It’s also heart wrenching and sad that no one will ever get to know Gage as we did.

When I was 20 weeks pregnant with Gage, the doctors discovered by ultrasound that our baby boy had some severe medical conditions. We were told that our son had extra skin folds at the nape of his neck (similar to that of Downs Syndrome kids), his kidneys had severe reflux in both which would end up causing constant urinary tract infections, he had a 2 vessel umbilical cord instead of the typical 3 vessel cord and that he had a congenital heart defect although they could not tell which type of defect it would be. We decided to go ahead and have an amnio done and the results came back negative for the most common birth defects. However, we were not aware at the time that the amnio did not test for chromosome deletions and for that matter, we had no idea what a chromosome deletion even was. During this time, we were living in Hawaii just finishing up our 3 year tour there when we were “medically moved” to San Diego to deliver our ill baby at the Naval Medical Center San Diego which is known for their incredible NICU work.

Gage Aaron Wade was born on March 8, 2008 a month early. He weighed 5lbs 9oz and was 19” long. Being a mom, everything about our son looked normal and perfect, regardless of the supposed medical conditions. As soon as Gage was born, I was allowed to hold him for literally 2 minutes before he was taken away from me and rushed to the NICU for immediate intervention. Gage was put on a ventilator the day he was born and would remain on the ventilator for the first 21 days of his life. At the time we thought that was the most difficult thing in the world, but we were just about to face the hardest journey of our lives.

During the first couple months of Gages life he remained on constant oxygen and had a surgery called a nissen fundoplication to tighten his stomach around his esphaegous to stop him from refluxing his formula every time he ate. Gage also had a g-tube placed for feedings since he was not able to nurse or drink from a bottle. At the same time, Gage had a ureterostomy to re-route his left kidney uerter to the outside of his body since there was a blockage between his kidney and bladder. When Gage was three months old, he was transferred to Rady Children’s Hospital where he underwent VSD surgery to repair what turned out to be a hole in his heart and to clean some of his heart valves which were abnormal as well. During his stay at the Children’s Hospital, Gage was reintubated and put back on the ventilator. Gage also contracted a severe fungal infection that almost took his life. At five months of age, Gage had returned to the Naval Hospital and moved to the PICU where a broviac IV and trach were placed after being diagnosed with severe tracheomalsia. Gages tracheomalsia was so severe that his trach was attached to a ventilator with high pressures to keep his windpipe open and to keep him breathing. At six months of age, Gage had a MRI and was diagnosed with severe brain damage, hydrocephalis, deafness (from the dieretic medications), possible blindness and we were told that he would be bed ridden and be on a ventilator for the rest of his life. We were given the options of either removing him from life support and letting him go on our terms, putting him in a childs convelscent home where he would live or to bring him home with us where he would probably have such severe oxygen depletion (he would dstat and turn purple if he got mad or had a dirty diaper or was uncomfortable, even on the ventilator) that we would have to recessitate him and the doctors were not sure we’d be able to.

It was then that we made the hardest decision of our lives. We decided to remove Gage from the ventilator and let him be free. I get the feeling that Gage knew what was happening and that he was happy that he was finally going to be healthy. Gage hardly ever smiled and we never got to hear his voice, but for two days before he left us I must have gotten 30 smiles from Gage in those two days. I think he was telling me goodbye. It was amazing. He also saw angels and God I believe. Gage always slept most of the day and night but for an entire day before he was gone, he started tilting his head backwards and looking up at the ceiling above his bed. It was unusual for him to do and I feel that he was seeing who would be waiting for him the next day as he went to be an angel, our angel. Gage passed away on September 25, 2008, it was a beautiful, sunny day and we were able to take Gage outside to a beautiful healing garden. This was only the second time we were allowed to take him outside in his entire six months and even then, we had half of the hospital with us…doctors, nurses, rt’s and a social worker. Even with everyone there, just holding him and staring at him and loving him was peaceful and wonderful. When it was time to let him go, we held Gage tight in our arms and kissed him, hugged him, loved him and cried as he left us. We knew when he had made his way to Heaven.

Gage was born with so many conditions (hydrocephalis, brain damage, deaf, possible blindness, tracheomalsia, pulmonary hypertension, intersistial lung disease, VSD, abnormal heart valves, kidney problems, low set turned ears, small hands and feet, high palate, small mouth and chin and feeding problems) and looking at him, unless you were a geneticist, you would never guess that every single cell in his body was affected. Gage had the most beautiful, deep eyes. He would stare at you and your heart would melt. It’s like he could see everything you were thinking and he was such a gift. His eyes were the window to his soul and what a wonderful soul our son has.

Gage had so many things stacked against him from the beginning, but he fought every single day of his life. Gages chromosome deletion was so rare according to doctors, yet I have met so many others whose children have been born with these deletions. Some, like us, have lost their children and others have children who fight every single day to live a semi-normal life. Gage is amazing and wonderful and unique and we love him and miss him so very much. We are proud that we were given him, even if for a short period of time. We are proud and blessed that we were chosen to be his parents and we would never have given that up for a minute. We know that Gage is in Heaven where he has no more pain, no more sickness and no more restrictions. He is free and happy and healthy and the day that we are reunited with him will be amazing.

We miss you and love you with all of our hearts Gage and we know that everyone who reads about you, whether they knew you or not, would have loved you too.

Jennifer and Eric Wade
with big brother Conner and big sister Abby