Tommy’s Story

Approximately Tuesday, June 30 – I took a pregnancy test. I could already sense I was pregnant even though my period was only a few days late. The test came back negative and I wrote off my feelings as just stress. I’m never able to predict my periods with any accuracy, so I was not too surprised by the negative result.

Approximately Wednesday, July 15 – Pregnancy Test #2 – but this time it is POSITIVE. I woke up Daddy to share the exciting news with him. We already had picked out your name – Thomas William. You were named after your two great uncles who had both died too soon – Jan’s brother, Tommy, who died at age eight and Mari’s brother, William, who died shortly after birth. How very ironic looking back on that now.

We were ecstatic to be pregnant. We had been trying for 3 months and were thrilled with the timing. We wanted our children to be 3 years apart and you were due to be born 1 month before Emily’s third birthday. Unfortunately, Daddy was between jobs and we were temporarily without insurance. We had to wait to go to the ob-gyn until we got insurance and that was nerve-wracking for me. Before we got pregnant with Emily, I had miscarried when I was nine weeks along and I dreaded a repeat of that.

In the days that followed, we shared the news with Grandma and Grandpa T and Great Grandma M while we were playing Balderdash. The clue was “What happened on April 3, 1899” – answer being “100 years prior to the due date of OUR BABY.” Emily is who told Nanny Jan and Papa Bill – she announced to them that she was “gonna be a Big Sister.” She was already excited for a baby to play with and care for.

Monday, July 27 – Daddy started his new job and we scheduled our first OB appointment with excitement.

Saturday, August 1 – We got to see you for the first time. I was already about 8 ½ weeks along and your due date was set for March 8. We could see your tiny heart beating and your umbilical cord was clearly visible. I called you a little gummy bear. I felt such relief that all was well. Dr. B estimated my chance of miscarrying was only about 2% – no higher than average at this stage of pregnancy.

Sunday, August 9 – Your Grandpa Emil was hospitalized after he suffered a massive subdural hematoma (a stroke) and underwent brain surgery. I left Emily in St. Louis and flew out to be with my parents. I was so worn out from being pregnant – plus the lack of sleep while I was there – but I am so glad I went. Two days later Grandma Mari took me maternity clothes shopping and we got a full wardrobe of warm clothing. I was already getting a poochy belly, but hadn’t gained any weight yet. I remember rubbing my swollen belly and feeling your love in my tummy.

Saturday, August 29 – What a sense of foreboding I had going to my 12-week OB checkup. I had told my friend Caroline the previous day that I feared something was wrong with you. She assured me that I was just having nervous Mommy jitters – but as they say, Mommy knows best.

The instant you appeared on the black ultrasound screen, all my fears became real. Your belly was enormous with what looked like a big balloon filling it up. I guessed it was your bladder, but Dr. Branson did not want to jump to any conclusions. He knew, though, that something was seriously wrong and wanted us to see a specialist on Monday.

After the appointment, we went to the lake with friends and family, as scheduled. Daddy was so sad. I’d never seen him like that. The news had really shocked him. As the appointed optimist of our family, it hurt him to the core that this awful thing would happen to us. I was (for once) the calm one – I guess because in some way I had grown accustomed to suffering. I felt it was my destiny. One thing after another had happened in my family and I just felt like it was my turn. The waiting was killing me, though. I didn’t know if you would live or die, if this condition was temporary or permanent.

Monday, August 31 – Daddy was in Birmingham for work, so Nanny Jan went to the specialist with me. After over an hour of ultrasounds, conducted by three different individuals, Dr. S met privately with us to discuss our “options.” He informed me that you had a very rare condition, which he termed in layman’s language “an obstructed bladder.” Your bladder had never been able to drain. This would eventually cause the amniotic fluid to dry out and your kidneys to die. There were three possible surgeries to correct this: (1) insert a shunt to drain the bladder into the amniotic sac, (2) perform laser surgery to open the obstruction or (3) remove you from my uterus, perform surgery and then replace you. On the one hand, it was good that we caught it so early because not much damage had been done yet. On the other hand, your condition was extremely serious since it had advanced so far so quickly and your body was too small and frail to handle the surgeries well. But, the fact that medical science could do something gave me hope for your survival. Before anything further could be done though, a normal amniocentesis and a favorable test of the urine in your bladder was required.

That afternoon they did the amnio, but the results would take some time to return. The following day, I flew back out to Eerie, PA with Emily to visit Grandma and Grandpa. It felt good to be with my parents at this very trying time. I could already feel you faintly moving inside of me. They say that the lack of amniotic fluid makes the movements more noticeable. On September 3, Grandma & Grandpa’s 32nd anniversary, Grandpa was released from the hospital and we celebrated.

Hundred of people were praying for you. Mommy and Daddy wanted you so badly – the son we had dreamed of. We prayed for a miracle.

Tuesday, September 8 – We returned to Dr. S for another checkup. In the last week, your bladder had grown another centimeter larger and your kidneys had more fluid in them. The doctors were worried, but still hopeful. The following day, I returned again to meet with Dr. A, Dr. S’s partner. We were planning to have surgery performed on Thursday and Dr. A wanted to see you, too. Now there was some swelling in your abdomen. They had never seen that in conjunction with an obstructed bladder. It normally indicated heart problems or anemia, but we prayed that the surgery would help correct his problem naturally. The swelling concerned the doctors, but they encouraged us to move forward. It was extremely early for a shunt-insertion surgery as you were only about 15 weeks old. The shunts were not designed for such a small baby and their microscopic camera would probably not be able to fit in to do the laser surgery, but surgery was the only hope medical science could give for survival. We continued to pray for a miracle.

Thursday, September 10 – What a day! I was so scared about having surgery – I’d never had anesthesia before and never been “under the knife.” But I would have done anything for you – you were my son and I was your mother and I wanted you to live so very badly. I couldn’t imagine that God would place you in my care and then I wouldn’t do everything in my power to save your life. I was also elated at the prospect that after this surgery I would be able to have a relatively normal pregnancy with you as the beautiful outcome. I was fearful that you may not even survive the stress of surgery and I would never again feel you move inside of me. All of our dreams would die with you.

The doctors were pleased as they started the ultrasound, which showed you were laying belly up – just right for inserting the shunt to drain your bladder. Unfortunately, when the doctor gave you a sedative so you wouldn’t move from that ideal position, the shock made you roll over – placing your ribs and spine in the way of their instrument. They prodded and tried and prodded more. After an hour of this, they resigned themselves that the surgery would not be able to be performed. If you had been a larger baby, the doctors probably would have been able to get the shunt in anyway, but you were just so small. I felt so let down. What a roller coaster!

Dr. S gently told me to take it easy and return on Monday, when they would check if you still had a heartbeat. He feared you would not live much longer. Once again, my heart broke. I spent the next day alone at home sobbing. I held my belly and dreaded what I felt was inevitable. At some point, I finally just gave you up to the Lord and left it in His hands to save you. Science had had its chance and it had failed.

That weekend, I feared that you had died as my heartbeat kept racing, my breath was labored and I tired very easily. I never again felt you stirring inside of me.

Monday, September 14 – First a nurse/ultrasound technician conducted an ultrasound. I kept looking for that ever-important heartbeat. I asked her if she’d seen it and she simply replied that that wasn’t what she was looking for; she was just looking at your bladder. And it was smaller, as was the swelling in your belly. Shortly thereafter the nurse left to get Dr. S. When he came in, he, too, looked for your heartbeat unsuccessfully. He told us that your skull had already become soft. This indicated to me that you had passed away some time ago, probably shortly after the surgery.

For what felt like the hundredth time in the last 2 ½ weeks, my heart broke for you. My emotions were so confused. There was truly a sense of relief that the waiting and the uncertainty were over. Looking back, though, I’d much rather have a roller coaster than the downhill ride I’ve been left with.

Before we left the hospital that day, Dr. S prescribed a drug for me to take to start my uterus contracting. I picked up Emily from preschool and we went to a McDonald’s Playplace together. I wanted to spend some special time with her, my precious sunshine. It obviously had not fully sunk in what had already happened and what was still to come. At about 6:30 that night I took the first dose of the drug. Dr. S had given me enough to take for 48 hours, so I was shocked what I started bleeding that same hour. I was admitted to the hospital around 8pm, after Jan picked up Emily for the night.

The nurse that I had had during the surgery, Pat, was my nurse once again. Pat shared with me that she had had 7 miscarriages prior to the birth of her living daughter. How she made it through all of that I do not know, but I do know that it is a testament to the strong desire a woman has to be a mother. Pat advised me to see my baby after he was born and I don’t know how to thank her enough for that advice.

Tommy was delivered at 3:35 am on Tuesday, September 15th. He was 6” long and weighed 1 2/3 ounces. He had ten perfect fingers and ten perfect toes and one enormous belly. I could see his tiny little penis. His skin had already deteriorated and he was the color of blood. His skull was soft, but you could see his little nose and closed eyelids. He was as beautiful to me as he is to the Lord. I admired him for a moment and only wish I had held him in my arms. I was then, and always will be, his Mommy, just as much as I am for Emily.

In the past month, my life has continued to be a roller coaster. No one knows what to say to me or do for me. There are no “socially correct” rules for this kind of tragedy. Did I have a miscarriage or a stillbirth? Was he a baby or just a fetus? How many children do I have? Is Emily still a big sister? Because of all that we went through to save Tommy’s life, I feel even more attached to him than an average mother would have. Tommy was such a part of my life for almost 4 months, that it will take such a very, very long time to deal with this grief, but the Lord IS my shepherd. He WILL guide me and comfort me. Everyday draws me closer to Him. I picture Tommy in Heaven with his cousin, Brady, looking down on us in love.

As a final note, the amniocentesis results came back normal and the urine tests showed that Tommy’s kidneys had already failed. This means that even if the surgery had been successful, Tommy would not have survived. The chances of this obstructed bladder condition happening to the average baby are about 1 in 6,000, but for our future children they are somewhere between 1 in 4 and 1 in 50. The risks are higher for boys than girls. Needless to say, this is scary for us, but it will certainly not stop us from trying to conceive again.

When we first learned that Tommy had this condition, I prayed for God to either heal him or take him quickly. Looking back now, I would give anything for another day with Tommy, to feel him move again in my now-empty womb, to see my belly grow big and round and full with him. I would have loved for him to at least grow big enough for me to hold him or bathe him or pet his hair or take his little handprints, even if I had had to do that after he had died. There is NO better way to lose your child. You are never ready for it.

Tommy, Mommy loves you very, very much. You will always be the precious son I had dreamed of. You will be forever in my heart and my prayers. I can hardly wait to hold you in my arms when we are reunited in Heaven. I praise God for making ME your Mommy for I have been blessed by you.

-Written by Kim (Mommy) on October 12, 1998