Trey Frederick Britton
September 26, 2006-November 9, 2006

In August of 2006, at 24 weeks pregnant, our family was told our baby Trey would not be born living because of two very rare conditions, hydrops fetalis and cardiomyopathy.  We spent many weeks trying to find hope for him, including a trip to Children’s Hospital of Philadelphia, where the doctors agreed he would be stillborn. 

Trey was born in our hometown of Buffalo, eleven weeks early, and in better health than expected.  His heart began to improve on its own which was completely unexpected, and at two weeks old, he was transported to Rochester for heart surgery.  My husband David, went to Rochester with Trey and checked into the Ronald McDonald  "House Within the Hospital" located inside Golisano Children’s Hospital at Strong.  We were told he would be back within three days.  I was ordered by my doctor to stay at home with our nine-year-old son, Alex, because I had hemorrhaged that weekend and had received four blood transfusions.


After Trey arrived in Rochester, he slowly developed a bad infection and the surgery had to be put off. 
 
That Friday, October 13th, a major winter storm hit Buffalo.  Alex and I were home alone, with no power since Thursday evening, and a dying cell phone. The New York State Thruway was closed and Erie County was in a state of emergency with a travel ban.  Dave kept calling with updates on Trey, but we had to keep them brief.  Friday morning he called to report that Trey's blood pressure was unstable and his kidneys weren't functioning like they should be (they had, in fact, shut down).  He told me it wasn't serious, he didn't want me to panic.  Trey's nurses, our social worker at the hospital, and even the respiratory therapist were all trying to find ways to get myself and Alex to Rochester, some even offering to come get us.  No one wanted Dave to leave the hospital because of Trey’s condition.  Then, around noon, Dave called and told us to get packed; we had five minutes to get ready.  Almost exactly five minutes later an Erie County Sheriff's car pulled into our driveway and loaded up our luggage.   It was explained to Alex and me that we would ride with them for a short while, be transported to a Genesee County Sheriff's car, and then switch again in Monroe County.  Alex enjoyed this part!  The second car ran lights and drove about 85mph for that stretch of the trip.  It was also quite eerie because there was no traffic and the damage to trees and buildings was amazing.

When we arrived at Strong, I was taken right to Trey and a doctor informed me that if Trey's kidneys didn't begin functioning, he thought Trey had about twelve hours to live.  I was beyond horrified; I didn't know how extreme the situation I was walking into was.  Last I knew my baby was in Buffalo and the nurses told us he'd be home to celebrate Christmas with us.  I was alone with Trey, standing over his isolette and he was barely recognizable to me.  The infection was really taking a hold of him.  If you've ever wondered what a mother does when she is told her son won't live without kidney function, I can tell you.  You make up a "you have to pee" song and sing it over and over again.  I can also tell you it worked like a rain dance.  Within an hour of our arrival Trey peed and his blood pressure came up.  I still say he was just doing what he needed to so he could get Mommy there.

That night we checked into the Ronald McDonald House on Westmoreland  Drive, where families with siblings of the patient can stay.  Our visit lasted almost five weeks and we experienced all the ups and downs the Neo-Natal Intensive Care Unit  has to offer.  We saw Trey have a wonderful recovery from the heart surgery, only to discover that while his heart had been sick it had done such extensive damage to his liver that he could not survive without a liver transplant.

On November 8th. Trey's amazing neonatolgist, Dr. Carl D'Angio, who we will forever feel indebted to, informed us that he had contacted a transplant doctor in Pittsburgh and they were willing to look at Trey the next day.  Arrangements were made so that Trey could be flown to Pittsburgh the next morning.  Dave and I immediately volunteered to be tested to see if we matched as donors and began making our travel plans. 

My parents visited that night, knowing it could be awhile before Trey was back in Buffalo, and it is such a blessing that they did.  Overnight Trey became increasingly unstable, his clotting factors were getting worse and worse and his blood pressure was dangerously low.  When we woke up the next morning and called for our typical chat with his nurse, we were told to come right over.  When we arrived, nurses and doctors surrounded Trey and we knew something wasn't right.  I think I knew immediately that we weren't going to Pittsburgh.  They worked for several hours trying to stabilize him.  Dr. D'Angio asked us to sit down with him and told us "Trey is going to die from his disease, you might want to call your family in".  I wasn't shocked.  I think I knew all along that I was somewhat in denial.  Dr. D'Angio was kind enough to offer to call my family and my parents left Buffalo immediately.  The nurse brought a rocking chair next to Trey's isolette and handed him and all his wires to me.  This was only the fourth time I’d held him since he'd been born.  At 2:00 that afternoon, Trey died very peacefully in my arms.  He passed only minutes before my parents arrived.  I held onto him for hours.  He is now healthy, comfortable, and happily playing with the other little angels in Heaven.

Trey shared an amazing and unexpected six weeks with us before passing away of liver failure.  He was determined to give us a chance to get to know him and every day was a gift from God.  Dave didn't work for almost 7 weeks, Alex missed the first two months of fourth grade (we did the work with him in the hospital and he still has fantastic grades) and we got to know our little boy.  We could not have done this without the option of staying at the Ronald McDonald House.  I wouldn't trade a day of it for anything.

Trey has already sent little messages to let us know he is watching over us.  We are expecting another little boy this year.  Amazingly, he's due on September 26th, Trey's birthday.

We have met amazing people through this experience and try every day to celebrate Trey and the friends he brought us together with.

We are very proud to have been asked to tell our story.  We hope anyone going through a similar experience finds it possible to turn fear into strength and eventually you will be able to focus on what positive comes from the situation.  Although it can be hard to see, it is there.

Thank you for letting me share Trey's story with you,
Heather Britton