Christopher was born on May 3, 2005, he was 29 weeks 3 days, and weighed 2lbs 6oz.  He was delivered early due to complications with preeclampsia.  Christopher was born with double outlet right ventricle, VSD, a 2 vessel umbilical cord, hypospaidus, and what made him most special to me, his extra thumb on his right hand.

Once his heart condition was recognized, Christopher was transported to Yale New Haven Children’s Hospital, just three days after his birth. It would be at Yale where we would learn our son would need open heart surgery once he reached 2kg (approx 4.5lbs).  The issue of gaining weight sounded easy, but for Christopher it would not.  Three days after his arrival to Yale my husband and I received our first 3AM call.  We were informed Christopher’s heart rate was dropping and he was coding.  Luckily, the medical staff was able to stabilize him and his stats went back to normal, cause of this episode was never figured out.  The next couple of weeks passed and with every ring of the phone our hearts dropped.

We would now be informed that Christopher now had NEC, a disease that affects many preemies but not well known and has a cause undefined.  Since his NEC progressed quickly, antibiotics would not help, he would need his first surgery.  The surgeon would end up removing 20% of his small intestine and 80% of his colon.  This procedure would leave him with an ileostomy until he was 2kg, then they would reconnect.  Again, weight gain would be needed, but this would not be easy, NEC, his heart and the continuous stopping of feeds would each hinder this process.

Six weeks after Christopher’s birth he was extubated and put on SNIPPV.  Unfortunately, this would not last long.  Two and a half weeks later his heart rate started dropping and rising, they would re-intubate. July 7, 2005, was when the doctors presented us with the facts about Christopher’s health.  They believed at this point in time action needed to be taken soon since his growth was staggering and other organs were being jeopardized.  We were informed by the doctors of  a procedure that would band his artery.  This procedure would serve as a temporary fix and would not be as invasive as the open heart surgery.  Four days later, on July 11th, I spoke to the surgeon, he felt Christopher was at a point where he would be able to sustain the surgery, it would be scheduled for that Friday, July 15th.  The Wednesday before the surgery would take place, I received a call at home from the hospital, they would be doing the surgery today.

My husband and I rushed to the hospital.  Once there, I was able to hold him, never thinking this may be one of my last chances to do so.  Christopher weighed 1755 grams, 3lbs 13oz.  He was taken to surgery with our understanding that the banding procedure would be the intent, but if his heart proved big enough the full heart correction procedure would be performed.  Time moved slowly. Nine hours later we were able to see him, he had made it through alright.  

The next challenge would be for Christopher to produce urine.   Thursday, no urine, he began to swell, his blood work was not good, and his gasses were all out of whack.  Many doctors began floating in and out of his room, each evaluating the situation and trying to find a solution that would help.  They concluded that Christopher had renal failure and they were not sure when his kidney function would start back up.  His only chance would be to have dialysis.  The dialysis would need to be done manually, no machines.  A catheter would be inserted into his abdomen, fluid would be put in and drained out.  There was a catch to all this, since Christopher had NEC there was very little room in his abdomen for the surgeon to place the catheter in the right spot.  The same surgeon who had performed his NEC surgery would perform this one.  We were lucky, she was able to place it in and it began to work.  His numbers still looked bad but were not getting worse.

Through this whole ordeal Christopher didn’t look sick and was awake, looking all around, not missing a moment.  He was our source for strength.  Saturday night would be chaotic.  Things weren’t looking good, monitors were not reading right, his numbers were all over the place, the blood work was awful and still no urine.  We were told they didn’t think he would make it through the night.  The weekend went and Monday arrived, things started to turn around, it was amazing.  Tuesday still ok, however he lost two of three lines, the lines lost were his A-line and IV line.   The doctors tried to put the lines in , but were unsuccessful.  Still no urine but the dialysis was still working.

4:00 AM, Wednesday morning, I woke up (my husband and I had been sleeping at the hospital since the surgery), the nurse told me Christopher had started to bleed through his chest tube.  They started to give him blood, and again tried to get a line in.  It was at this point that I could no longer watch.  I kissed Christopher, told him I loved him and left the room.  As I walked out I knew this would be the last time I would see Christopher alive, I just had a bad feeling.  The doctors did everything they could that morning, but at 8:30 AM on Wednesday, July 20, 2005 Christopher Joseph Concha became an angel. Christopher Joseph was a true fighter who never gave up.  He was given to us and to all of you for a reason.  He touched so many lives in his short 11 weeks of life.  Please cherish every minute you are able to spend with your child and hold those moments close to you. I can’t tell you how wonderful all of the doctors and nurses were to Christopher and to us.  They really work such miracles on these babies.