Matthew's Story

“It was the best of times, it was the worst of times”, so wrote Charles Dickens in the opening sentence of a Tale of Two Cities. This could not have been more true on Valentine’s day of 1998. Our first born son, so very much planned for with all of the hopes and dreams that all good parents wish for, came into the world early that Valentine’s morning. It should have been the happiest day of our lives, yet we spent most of it with fear, sadness, and confusion after learning that he was born with Autosomal Recessive Polycystic Kidney Disease. It was a disease that we had never even heard of, knew nothing about, and surprisingly many of the doctors at the well known New York City hospital where he was born, knew very little about this disease as well.

Our descent into this madness began on February 12, when at 36 weeks along, I went to get a sonogram to determine the fetal position. It was at 8:30 am when the sonographer told us to wait for the doctor. Soon, a radiologist and the head of OB/GYN came into the room. They began to speak to each other as though I was not there, and I will never forget them saying the words “inconsistent with life”. Then, more and more doctors came into the room. Not one of them addressed myself or my husband. Panic began to spread throughout the room. Shortly thereafter, my Ob/Gyn called to say that there was possibly a problem with the baby, but one she believed could be fixed with surgery. Her voice over the phone that day was steady and secure, and she told me that I was going to become a mommy that day. The power of denial was fierce for me that day, and I held onto her words and to her calm attitude as a c-section was planned. The c-section, thankfully, was scrapped by my doctor after she determined that the baby was not in any distress and we would try for a vaginal delivery. I was induced on February 12, and 36 hours later, the light of my life, Matthew Logan Spier was born safely at 12:38 am on February 14, 1998 weighing in at 6 lbs 11 oz.

At some point the next day we were told of the diagnosis, by a nephrologist, who I really hope by now, has found another specialty to study. He told us that most of the children born with this disease do not survive and the next few days they would watch the baby to see what his fate would be. Matthew was in the NICU for about two weeks. During that time, nothing major occurred other than some jaundice. We luckily found ourselves a wonderful pediatric nephrologist, Dr. Ken Lieberman, who was the first doctor to tell us that Matthew was not going to die, and that he was going to live. I will never forget his words either. It was the first time in two weeks that I felt hope. While he was honest, he told us that it would be a bumpy road, he also said that there was plenty to be hopeful for.

Well, Dr. Lieberman knew what he was talking about. The road has been very bumpy, full of potholes, but in the end we have a beautiful, robust, energetic eight year old boy.

At five weeks of age, Matthew was hospitalized with a liver infection for two weeks. At eleven weeks of age, he had a hernia repair. He didn’t have any other major hospitalizations until at the age of six, when his kidneys began to fail. Luckily, Matthew never felt sick or weak because of his disease. We knew that he needed a kidney transplant, and we were very lucky that his daddy had a matching kidney for him. What we didn’t bargain for, was that prior to the transplant, he would need another operation to reduce the portal hypertension so that he would not run the risk of bleeding out during the transplant. We also didn’t bargain for the month of dialysis treatments in between the two operations. To make a very long story a little shorter, Matthew came through the first operation with flying colors. He even was able to go to summer camp part time during the month in between his two surgeries and while undergoing dialysis.

On August 10, 2004, Matthew and my husband went into the operating suite at Mount Sinai Medical Center in NYC. I sat in the waiting room with about 15 family and friends and prayed like I never have prayed in my entire life. Thankfully, all of my prayers were answered, and I got my son and my husband back safe and sound. It is impossible to articulate on just one page all of the thoughts and feelings that I had and continue to have, but I can show you a picture of Matt, and let’s just say that a picture is worth a thousand words.

It has been just over two years since the transplant, and Matthew continues to take all of his medications, and continues to have bumps in the road, but for the most part, he has been able to lead a very normal and happy life. Matthew loves to play baseball and basketball, loves his computer and video games, loves his summer camp and going to school, loves to tell a good joke, loves his best friend Hayden, sometimes loves his little brother Benjamin, and ALWAYS makes his mother and father beam with pride as a spirited and happy little boy.