Diagnosis: Maternal Renal Failure and IUGR (PUV)
By Thomas’s Mother
This is the story of our son and the short time that we had with him.
Thomas was our third son. We found out we were pregnant with him January 3, 2004. His due date was September 19, 2004, which is also my father’s birthday. Not that either of my other boys were born on their due date – Matthew was two weeks late and Joseph was four weeks early – but it was fun to think he might share my Dad’s birthday.
The pregnancy, like the two before, was pretty much normal (at least at the beginning,) with no morning sickness or any other major complaints. We told our family about his impending arrival in March. We waited until after the three-month mark because we thought that after that point we were “out of the woods,” so to speak. We also wanted to wait a while to tell Matthew and Joseph about their new baby. I knew for the next 6 months I would hear “Is my baby coming today?” Matthew was so excited as he remembered the arrival of Joseph and he was so good with his baby. Joseph had just turned one and had no real idea what was going on, except that I kept telling him there was another baby in my tummy. And, like I said, the pregnancy was non-eventful (which, with a three-year-old and a one-year-old running around, was a good thing.)
In April, I went to my Ob/Gyn for a regular checkup. The checkup went fine that Friday so I carried on with my day as always. I went to bed as usually Friday night and woke up Saturday morning around 2:00 a.m. in the most unbearable pain I had ever been in. I was rushed to the local hospital where both my OB and regular doctor practice. To make a long story short, they ran every test in the book on me and could neither figure out what exactly was wrong nor control the pain I was in. I was transferred to Rhode Island Hospital for top of the line care in their MICU. The Women and Infants Hospital is right across the street from it and they worked together to care for Thomas and myself.
To make a long and unbearable story short, they discovered that I was in complete renal failure and most of my organs were shutting down (kidney, pancreas, liver.) After plasma transfusions and different meds I started to recover. They kept a close watch on Thomas and he still had a heartbeat. But by this time they had run tests on Thomas and they thought that he had Smith Lemli-Opitz Syndrome. We had amniocentesis, ultrasounds and genetic testing and eventually ruled that out. But they kept telling me: something is wrong with your baby, we just don’t know exactly what it is. After about two weeks I was able to go home. We were traveling from Massachusetts to both hospitals in Rhode Island on a weekly basis sometimes twice a week. This alone was exhausting.
As we reached the 25-week mark for Thomas, he was measuring only 20 weeks. It seemed that he had stopped growing and developing and there was almost no more amniotic fluid left around him. They couldn’t even do another amniocentesis safely because there wasn’t enough fluid. They told us that he would probably not make it to full term and even if I could carry him that long he would not survive once born. Mind you, my health was not very good since I was still recovering from the renal failure, (and very slowly, I might add.) I was told after the fact that they didn’t think I would survive, never mind Thomas. We had to make a decision about what to do, end the pregnancy now or wait and take a chance of me relapsing before we made it to the nine-month mark. Either way, I was told my baby would not survive.
We decided it would be best for everyone if we ended the pregnancy soon. I had two small boys at home to care for and I was trying to get my health back. It was the hardest decision we ever had to make. My baby was to become an angel and I had to pick when it was to happen. I felt like I was playing God and that was so unfair. The fact that we had to make this decision was almost incomprehensible. I kept asking myself why couldn’t I have had a miscarriage? Then at least I wouldn’t have had to make the decision and it would have been in Gods hands. I also kept asking how could God ask a mother to end her baby’s life? It wasn’t fair to have to make this decision. We finally came to terms with our decision and called the doctor. I thought it would be easier on my boys if they didn’t have another 4 months to get even more attached to Thomas.
Once we made our decision, it was less than 24 hours until I was induced. I walked into Women & Infants Hospital pregnant with Thomas and knew I would be walking out alone. I almost couldn’t physically walk in the doors knowing what was going to happen. I was going to have to delivery my baby just as if he was to survive. I was induced with pitocin as I was with my first son and my cervix was dilated with laminaria sticks. I lay in a hospital bed just like I had with my other two sons but this time I knew the outcome would be very different. To say I was sad or upset or in complete despair or any descriptive word just does not do justice to the feelings I had at this time. It was very slow going and it took two days of lying in the hospital hooked up to IVs and having my cervix dilated before I started to hemorrhage. Not knowing if they could stop the bleeding, I was rushed into the operating room, where Thomas was taken from me. Lying there over the past few days, I was told I would at least be able to hold my baby and tell him goodbye before he left this world. Now, with me bleeding, they had no choice but to extract him from my womb. I was awake the whole time in the operating room as they did this and I couldn’t believe it was happening. I was not able to hold him or see him.
The wonderful nurse who stayed with me almost the whole time brought me his tiny footprint on a card. We hadn’t picked out a name for our son yet. We waited until almost the very end of our other pregnancies to pick out Matthew and Joseph’s names. So we took the letters from their names and saw that it spelled out Thomas. This was ironic because as I lay in bed awaiting the inevitable, “My Girl” was playing on the television. And as you may or may not know, the boys name in the movie who died was Thomas J.
We had an autopsy performed on Thomas in the hope we could find out exactly what went wrong. Unfortunately, there were no answers except that I got some type of viral infection which caused my organs to shut down and unfortunately Thomas was not far enough along to survive on his own and I couldn’t protect my baby (as any mother would do.) And he just stopped growing and developing.
We decided that his burial would be very private. It was harder than words can explain to deal with his loss ourselves. I personally couldn’t have dealt with friends and family being there for this. I still didn’t have the strength to explain to other people what had happened. I could hardly tell my immediate family the details. It was much too hard for me to talk about. We had Thomas cremated and we buried his ashes near both sets of his grandparents. He is now our Angel and is loved as much as any earthly angel would be.
It pains me so much to talk and even write about this event in our lives, but it is also healing that others will know how much Thomas was and still is loved by his family. There is a pain so deep in my heart due to his loss that I know it will never heal completely. As time goes on, we find new ways to deal with his loss and new ways of healing. Telling this story was one of those ways.