My pregnancy had gone fine, except for some spotting here and there, which is normal for me. I went in for a routine u/s where my midwife noticed that my baby's bladder was extremely enlarged(it was as big as his head!) She didn't want to scare me, so she sent me home and made an appointment for me to see a perinatologist the next morning. As I left her office that day, alone, I thought my world had ended. Even though she tried to assure me it would be ok, I knew in my heart that something was seriously wrong. My husband and I saw the peri. the next morning. He did extensive ultrasounds. We were then told that our babies bladder was obstructed and that it looked like the urine had backed up into the kidneys, causing them to fail. He told us our child(most likely a boy, since this is mostly seen in males)had less than a 1% percent chance of living after birth. He said the best thing to do would be to terminate the "pregnancy". Like our child was only a "pregnancy", not a living being. We told him this was not an option for us and wanted a second opinion. He put us in contact with the Perinatology Specialists at our local University Hospital.
By the time we saw them I was almost 18 weeks. They didn't seem to be in any hurry. There I had several more ultrasounds done, and the original diagnosis was confirmed. But, this Dr. gave us a little bit of hope. He said that they couldn't tell with an ultrasound if our baby's kidneys had actually been damaged and failed. He reccomended that we do a series of urine draws from the babies bladder. Testing the urine in his bladder would tell us if his kidney's had stopped functioning. We agreed and they did it immediately. The procedure was just like an amniocentesis, except the needle is inserted into the baby's bladder, where some of his urine is drawn out for testing. They told me the same risks would apply with this as with amnio. so they sent me home to rest. I was to come back in two days for another urine draw. The purpose of this testing was to see if his kidney's were still working, because if they were, they could do two things to try and help him. 1) A shunt could be placed into his bladder to drain the urine out into the amniotic sac, until he was born and surgery could be done to fix the blockage. or 2) An intra-uterine surgery could be performed to try and fix the blockage, before he was born. Also with his urine not draining, he had no amniotic fluid around him, and therefore his lungs could not develop. Two days later we went in for a second draw. They would not have the results until the next day. So we were sent home to wait. The next morning we recieved a call to come back to the hosp. The dr. wanted to speak with us in person. We knew it was bad news.
With the support of our family around us, we went back to the hospital. The dr. then told us that indeed his kidney's had failed and there was nothing they could do for him. They gave us three options: 1) to abort him, 2) to induce labor and deliver immediately or 3) to try and carry him to full term. We were of course devastated and had so many questions. If we chose to carry him would he be in pain? Were there health risks to myself?
We were assured that there were no health risks for me, that this would be just like any other pregnancy, except the baby was sick. They couldn't really say if he would be suffering, but did say he wouldn't live longer than a few minutes after birth, with no lung capacity. We told him that terminating was not an option for us, and we needed to take the weekend to decide what to do. This was the hardest decision we have ever had to make. But through a lot of prayer and fasting, we made our decision. We knew that the Lord had blessed us with this child. It was His to give and His to take away. And so we decided to carry him to term or as long as his little body would make it. The dr. wasn't very supportive, but he gave me permission to continue seeing my midwife.
The pregnancy progressed normally, except there was the continued absence of amnio. fluid. I felt him move much more than I had my first son, there was no cushion between us. I remember how hard it was to go into a store and see baby clothes, and on first impulse, think I'm going to buy this, and then reality kicks in and you remember you have no need for it. My midwife gave me little hope, even though she was wonderful and very supportive of our decision to carry him. I am glad she was honest with me. Instead of planning his nurserey I was planning his funeral. I wanted everything to be perfect. This was the only thing I would ever be able to do for him. Don't misunderstand, I still prayed everday that Heavenly Father would grant my child a miracle an heal him. But I always knew in my heart that it would not be so. And so I cherished every day and every little kick I had with him. Since there was no fluid, he was always in a ball and my mw could not tell if he was actually a he.
We just assumed and named him John Walter Taylor after his two great-grandpa's. He was due on January 15, 1999. But I went into labor on December 12, 1998 and had him at 1:30 a.m. on December 13 at 35 weeks. My labor was very quick, which was a great blessing. He came into the world crying, it was a tiny cry, but still a cry. This was a surprise becuause my mw didn't even think he would make it through the delivery. He weighed 4lbs 8oz and was beautiful. He was very purple though. He was immediatley given a name and a blessing. The NICU team was right there waiting for him. They were told that we did not want any life support. We did not want to prolong his life, and then only have to make the decision to take him off it.
They were right at my bedside, so he was never out of my sight. Within ten minutes he was having difficulty breathing on his own. We decided to let them bag him(help him to breath) while we waited for an x-ray of his lungs. We wanted to make sure that he didn't have any chance of being helped. We got to hold him and introduce him to his big brother Sam, who was two at the time. We got many pictures and video. The neonatologist came in as soon as the x-ray was done and told us there was not enough lung mass to sustain life. There was nothing they could do for him. These were the hardest words I had ever heard in my life. Up until then I had the tiniest bit of hope in my heart that somehow he would be ok. He said he was very sorry and left the room. We asked the NICU team to take the tube out of his throat. Our Bishop gave him another priesthood blessing, and then we asked everyone to leave the room. We held him as he left this world, and entered our Father in Heaven's arms. He lived for exactly two hours, dying at 3:30 a.m.
We were surrounded by our families who had all said hello to John, and now they said there good-byes. They all left us to be alone with him. We bathed him and dressed him in the outfit and blanket we had chosen for him. We kept us with him for several hours until about 9 in the morning. We needed to get his little body to the University Medical Examiner for an autopsy, so we let him go. He was buried next to his great-grandpa John three days later.
His autopsy revealed that he had a very rare disease called VATER Association. Each letter in the word has to do with a certian body part. This disease is not always fatal, but John's case was extremely severe. He had multiple defects. I am so thankful that we chose to carry him, and that we got those two precious hours with him. If this ever happens again, which we have been told is possible, I will make the same decision. It is not our place as parents to end our child's life. May the Lord bless all who have or will go through the loss of a child, and may He bless those who leave the decision in His hands.
In Loving Memory of my Son John Walter Taylor
Love, Jaime Taylor, his mommy
I am looking for others who have carried and lost a child with VATER's. You may e-mail me at: