I was 33 years old when I became pregnant with my first child. I was having a picture-perfect pregnancy until my 18 week routine ultrasound at my OB/GYN’s office. During the ultrasound, it was discovered that the baby boy I was carrying had an enlarged bladder and there was very little amniotic fluid surrounding him. My doctor set up an appointment for us to see a perinatologist right away. At the perinatologist’s office, our son was diagnosed with a rare condition called posterior urethral valves (PUV), which is an abnormality of the urethra (the tube that drains urine from the bladder to the outside of the body for elimination). The urethral valves had a small opening that was impeding the urine outflow and causing reverse flow which was affecting all the urinary tract organs including the urethra, bladder, ureters, and kidneys. The perinatologist also suspected genetic disorders, specifically either Down’s syndrome, Trisomy 13, or Trisomy 18. At this point it was suggested to us that we terminate the pregnancy. We ignored the doctor’s recommendation and decided to seek treatment options for our unborn son.
I had an amniocentesis which revealed that there were no genetic disorders after all, so all we needed to concentrate on was the PUV. One of our options was to do nothing, which would mean that I would miscarry at any time since there was no amniotic fluid surrounding the baby. The second option was to have weekly amnio-infusions and have a stent placed in the baby’s bladder in-utero. We chose the second option. We named our son Tanner shortly before going into surgery. It took two surgeries in-utero to successfully place the stent. After the surgeries, the bladder appeared to be draining so we were elated. A few days later, however, ultrasound revealed that there was reverse flow into the kidneys causing them to become very enlarged due to fluid in the kidneys. At each subsequent weekly doctor’s office visit, the kidneys appeared to deteriorate more and more. The right kidney appeared not to be functioning at all, and the left kidney was severely damaged and it was unknown whether or not it was functioning. At this point the perinatologist referred us to a pediatric nephrologist who explained what treatments would need to take place after Tanner’s birth. We were told that our son would need several surgeries and would spend time at a children’s hospital. He would have to go on peritoneal dialysis and then at two years of age would go on a kidney transplant list. My husband and I visited the children’s hospital and tried as best we could to prepare ourselves for Tanner’s difficult future.
We were never told that our baby may not survive. We were only told that he would be very sick and would have a difficult life. The doctors kept reminding us that it wasn’t too late to terminate the pregnancy. One doctor even called me on the telephone and told me he’d like for me to reconsider my decision not to terminate. He said my son may always have to live in a children’s hospital and his life may be miserable and full of pain. He said that if I don’t terminate the pregnancy, I may feel guilty later on because I could have spared my son such a miserable life. His words really hit home, but I still knew in my heart that I was making the right decision. Tanner’s life was in God’s hands, and I trusted that the Lord’s will would be done. Besides, the doctors wouldn’t know the extent of his problems until they could evaluate him after birth. There was still a chance, however slim, that our son would be okay.
In my 33rd week of pregnancy, I went into early labor and had to deliver our son via emergency caesarian section. There was a team of pediatricians who began working right away on our 6 pound 14 ounce precious little Tanner. Tanner was not breathing so the doctors immediately put him on a respirator. Tanner’s 1 minute Apgar score was a 1 which meant he was barely alive. The doctor came over to me while I was still laying on the operating table and told me they would do everything they can but he was not encouraged by Tanner’s condition. They rushed him off to the NICU unit before I ever had a chance to see him.
A short time later while I was in recovery, the pediatrician visited me and told us the bad news – that Tanner would not make it. He told us that we would be able to hold Tanner before he died, but he did not expect Tanner to live very long. Tanner only had one lung and it was very underdeveloped and would not be able to support life. The doctor said this was a direct result of PUV. We spent the next 36 hours at our son’s side, holding him and loving him. Although I knew my son was dying, I had never been happier in my whole life because he was the greatest gift I had ever received. I knew that we made the right decision to grant him life, albeit how brief. He touched our lives in a way that no one else ever could or would. He was our little miracle and we loved him with all our hearts. After 36 hours of life, we made the decision to take him off the respirator and he died a very peaceful death, in our arms.
Although Tanner was with us for only a very short amount of time, I have no regrets. All those weekly amnio-infusions, the two in-utero surgeries, the sleepless nights of worrying, the hours spent praying, all have been worth it. I would do it all over again just for those wonderful 36 hours that we had with Tanner. He was my pride and my joy, and he changed my life forever. He has deepened my faith, given me hope, and left me with such wonderful memories. Since then, I have had two more children, a boy and a girl, who are both in perfect health. But I will not ever forget my beautiful, precious Tanner.