“…Robin is at peace and that my grandmother is watching out for her.”
Robin Leigh Stahl, Trisomy 13, 10/8/81 – 11/1/81, Clyde Ohio
When I was pregnant, I was 18, young dumb & naive. I managed to get Toxemia so was ordered to the hospital on October 1st for total bed rest. Doctors decided to induce me on the morning of the 7th because my blood pressure would not stabilize. I had like cramps all day long and all night. I rang the call light a couple of times because I was just uncomfortable. Finally, around 6:30 am on the 8th, a nurse checked me and then ran out of the room, got some help and next thing I knew, I was on my way to the delivery room. My sweet baby girl was born at 7:08 am on October 8, 1981. She was very tiny, weighing in at only 4# 5 oz. My family doctor, who I had asked beforehand to check out my baby, came to the hospital and checked her out and called in a friend, a regular pediatrician. Nothing was said to me about anything.
On October 11th, we were sent home, yes Robin and I. I was given instructions – because she was so tiny, I had to make sure and feed her every couple of hours and to keep her warm. The first few days were okay. Robin seemed fine. My doctor’s office called and said to stop in at the pediatrician’s office to get results of the blood test I had no idea was run. So a few days later, I stop in and the pediatrician tells me some gobbly gook and says it’s Trisomy 13. He acted very calm, like it was no big deal or anything to get upset about…so I didn’t. I just went on my way.
About a week later, we noticed Robin kind of had club foot which was common in my family so we took her to an ortho. We’re sitting in the office under fluorescent lighting where Robin had a bit of a blue tint – we thought it was the lighting. The ortho comes in and we talk, then he says you know, she needs to go see her doctor as soon as you can. I don’t think something’s right. Now I was scared. We go back to the pediatrician’s office. I walk in carrying Robin and we’re taken into a room. The doctor comes in and asks what the problem is and I explained why I was there. I will never, ever forget the words that man said to me next:
He said, “I told you your baby is dying. She has Trisomy 13”
I just looked at him, then at Robin. I had no idea! I didn’t understand! Then the doctor says we needed to get her up to a bigger hospital and was going to have Lifeflight helicopter take us but the weather was not good so next thing I know, Robin and I are hauled in an ambulance and rushed to the bigger hospital, the Medical College of Ohio. This was October 27th.
We got to the hospital and Robin was placed in a little bed in her very own room and a cake holder-type cover was placed over her for oxygen. I stayed with her, just in total disbelief, totally unable to comprehend what was happening. The next day, doctor after doctor came into the room to check her out and then confer with me. Bits ‘n pieces I caught of what all they were saying. A couple of doctors explained that one side of her heart was too small and the other side was too large so she would need surgery to correct. Another doctor explained her left eye had failed to develop so she would need surgery to correct that. Still more doctors explained that since she had this little wart-like thing on her left hand…that that was the start of another finger and would need to be removed. After hearing all of this, I was exhausted and again, in total disbelief. All I could do was stare at my beautiful baby with the dark brown hair and perfect-looking skin.
The next day, another few doctors came in and really blew my world apart. They started to explain, really explain Trisomy 13 and in language I could and would understand. Remember this was 1981. There wasn’t the Internet yet. Alright, I was sitting down. The doctors explained that Trisomy 13 was a genetic condition and that most likely either the father or I had the particular gene. They suggested we both have the blood test to determine it. They said that if one of us had the gene, that it didn’t mean we had problems, just that any children we had might be affected. If the gene was in me, there was a 50% chance my child would live; if the gene was in the father, the percentage dropped to about 5%. It was also explained that Trisomy 13 meant the number 13 chromosome had broken off and attached itself to another chromosome. The lower the number of Trisomy, the greater problems it caused. They explained that a baby with Trisomy 1 had never been born alive. Now for the hard part. The doctors said that babies with Trisomy 13 usually passed away from complications attributed to Trisomy 13 with in the first month and that no baby with Trisomy 13 had lived past the first birthday.
With news like that, I was stunned. All I could do was look at Robin and cry. Was I the carrier of this deadly gene? Or did her father give her the gene that was going to kill her?
The next few days were a blur. Robin had to stay on oxygen all the time so I wasn’t able to hold her much. Someone was sent in to ask me about what I wanted done, if she should take a turn for the worse, did I want any life-preserving measures taken? I immediately gave an answer that has haunted me to this day – I said, “No, please don’t do anything.”
I had been at the hospital non-stop since we were admitted. Finally, on October 31st, I was encouraged to go home and get some rest. We left at around 4 pm and headed for home. I got cleaned up at home and settled into bed and fell asleep. Around 1 am, the phone rang. It was the hospital with the news that Robin had taken a turn for the worse and that we should get up to the hospital.
We rushed around to get dressed and head out, not knowing what to expect. We lived about 40 miles away. We’re on the road, speeding to the hospital on the turnpike. And of course we were pulled over. I explained to the officer why we were going so fast and he said okay but he couldn’t give us an escort but to try to keep the speed down a bit and he would radio ahead to other officers to let us go. We got back on our way and finally reached the end of the trip. I looked at the clock and it said 2:05. From that exit of the turnpike, it was only a few more miles to the hospital. We raced to the hospital, got parked and ran into the building and up to the floor Robin was on. I started to run past the nurse’s station when one of the nurses on duty called out, “I’m sorry but she’s gone.” I stopped in my tracks and looked at the nurse and the first words out of my mouth was, “Good.” I’ve also felt horrible about saying that but I think any parent knows the meaning behind what I was saying. With all of the problems Robin had, I didn’t want her to suffer or be in any pain. I certainly didn’t want her to die!
After this, I was asked if I wanted to see her. I didn’t. I couldn’t. Then I was asked who I wanted to have take care of the final arrangements. I just said the first one that came to mind. The hospital asked us to come back to the hospital in the morning to take care of some paperwork, etc. Then we headed back home, numb, exhausted, too overwhelmed to cry or do anything. Calls to family were made.
The next morning we went back to the hospital where someone wanted to talk to us about Robin. Since the hospital was a teaching hospital, I was asked if I would allow them to perform an autopsy on her. I bluntly said, “NO, she’s been through enough!’ At this, I was asked if I was absolutely sure because an autopsy could help others find out more about the condition and maybe help other children. Talk about laying on the guilt! All I could think about was that I had a little girl who would never grow up and experience any life, she was taken from me. I didn’t budge from my decision so the person trying to convince me to let them do the autopsy finally gave up, kind of angrily. We left the hospital and went home. Home to a place without my baby. Her crib and all the stuffed animals and clothes were there just waiting for her. Only she would never use the crib or play with the toys or wear any of the cute little outfits. I was MAD, ANGRY and every other word you can associate.
Final arrangements were made. My maternal grandmother had recently passed away, in March 1981. I was extremely close to her. I took care of her while she was sick with colon cancer. She battled for 3 years with a couple of surgeries and rounds of chemo. Anyway, it was decided that Robin could be buried atop my grandmother. The funeral home said we could only show her for one day because a baby’s skin was so delicate and would deteriorate too quickly. So the viewing was one evening and the funeral was the following morning.
Graveside services were held at the Catholic Church I had grown up with, graduated from and attended Mass. I ordered a small headstone that matched my grandmother’s. On it was engraved, “Little Angel”.
A few months later, the hospital called to say the special blood test results were in and we could come in to get the results. So we did. We were told that the father was the carrier of the #13 gene, the gene that killed my baby. All I could do was look at him. I mean, I knew it wasn’t his fault. My feelings grew to anger and to hate. I know they were irrational. A short time later we divorced after a turbulent and sometimes violent marriage.
It’s now been 33 years since all this has happened. I remember many of the happenings like it was just yesterday. I look at the clock on her birthday and remember the time she was born. I always get depressed and touchy on the two days – October 8th and November 1st. Thankfully, my husband and two girls understand and know to just give me time and space. My girls and I talk about their big sister Robin and wonder what she’d be like today. My youngest keeps the only picture I have of her, the hospital birth picture, in a frame in her room. This past year, on Robin’s birthday, my youngest wanted to take white roses to her grave. I’ve only been to Robin’s grave a few times in all the years. It’s too hard. I took my girls to it so they would know where it is.
I often wonder what Robin’s life would have been like. I always hated it when somebody would say her passing was for the best. In my head, I know it’s true but in my heart I get mad. How can it be for the best that my child died? Or any child for that matter? I know I’m not being rational. How can I be? I think that any parent who has been through the loss of a child like this understands. At least I hope they do. I do know Robin is at peace and that my grandmother is watching out for her. That’s about the only thing that helps me.