Parents of Multiples Forever

In Memory of Michael
May 24, 1994 - September 7, 1994

These horrible tragedies happen to us too fast and so unexpectedly. I am collecting as many CHD and twinless twin stories as I can for myself and for Laura as well. Laura is the surviving twin of Michael. As of submitting this story, she does not know yet that Michael is her twin, and I will discuss this with her one day when she can better understand the beginnings of it all. I want her to have other stories to read that are similar to ours, so she will not feel alone.
I love to share my story whenever possible. For me it helps release some of my grief. Beware it is rather long, but all my thoughts and fears are included, again not just for myself, but for Laura too.
In October 1992, I found out I was pregnant with twins. Wow what a surprise! We already had one child, a boy, Kenny, who was 2 1/2. The pregnancy was fine except for a lot of nausea, exhaustion and high blood pressure complications. With my first child, I was in premature labor at 29 weeks and delivered at 32 weeks. The Gods were with us and gave us a healthy child. He was small at 4.8 lbs, 17 inches long but healthy. So with this pregnancy, I was expected to deliver early again especially since I was having twins. I had ultrasounds done every two weeks, and the babies progressed well the whole way.
Around April 1994, I started being admitted for uncontrolled high blood pressure. I would spend a few days in the hospital and then back home. On Friday, May 20, I was admitted again for my blood pressure, and this time it wouldn't come down. My doctor decided it was time to induce labor. I was 36 weeks ~ not bad for having twins and being high risk.
Labor was to be induced on May 24. At 8 am, I was wheeled to Radiology for an ultrasound. You know how it is; you're laying there, it's dark, you're looking at the screen sideways and trying not to breathe too loud. I was there to determine the position of the first baby so we would know if I could deliver vaginally. Michael was sideways so we had to go for the c-section.
The radiologist was having trouble screening Michael because he wouldn't stay still. He was like that through the whole pregnancy. She checked baby #2, Laura, and she looked great. She was determined to get a good scan on Michael and finally did. She started muttering something about only two chambers and left side gone. My husband caught on right away, but I was getting confused. The radiologist left to get a doctor.
The doctor confirmed. There was something wrong with the baby, his heart, congenital defect, Hypoplastic Left Heart Syndrome (HLHS). She said she'd let my OB know.
I'd gone numb at this point. How could it be? This hadn't shown up before. I went back up to my room. A short time later, my OB came in and said he'd call the best Pediatric Cardiologist he knew in town. A short time later, Dr. Kenneth Bloom walked in. I was in bed laying on my left side only because of my blood pressure. My husband, mom and sister were there too. Dr. Bloom explained to us about this condition and stopped to ask if I understood and had any questions. I could barely think much less ask questions. My husband is a paramedic and followed right along with him on this so I guess I knew it was safe for me to not be totally coherent.
The doctor drew some pictures of the heart and gave us our options. Surgery, which was no guarantee, would start off with corrective surgery to hold him until a heart came in, which we didn't know when because he was so small, or we could do comfort care, let him die naturally and in his own time.
Delivery was scheduled for 6 pm. We had six hours to decide what we wanted to do when Michael was born. If he was dead, did we want to revive him and start surgery or give him comfort care?
As I said at the beginning of my story, our first son was born at 32 weeks. Although healthy, he was in the hospital for 10 days for observation and weight gain. We saw first hand at that time what goes on in NICU and even made friends with a couple who unfortunately, were not as lucky as we were and lost their baby, Nathan, at 10 days. They had tried everything to keep him alive. The mother was limited in holding him until he died. He was covered with wires and tubes and had been cut open in several places many times for various surgeries to try to save him. Of course we felt horrible for them but made a decision we thought we would never have to stand by. We decided that if this ever happened to us, we would let our child live a natural life and have a natural death.
At this time all I wanted to do was save my child. How could I possibly think of "letting him die"? But I was in no condition to make any kind of rational decision and fortunately my husband was the one with all the strength. He remembered back when Kenny was born and of our experience in NICU. He asked me if comfort care was still what I wanted to do. In my mind, I knew this was the right thing, but in my heart I was selfish. I wanted him to live, healthy or not. I wanted him to be with me. I agreed to comfort care, but it's not what I wanted.
Finally came 6:00. I remember being excited about the birth. And scared. Michael was born first and came out crying. I felt relieved. Then Laura, crying and healthy. We had our Priest there with us and he immediately baptized Michael and blessed both babies. Michael weighed in at 4.13 pounds and 19 inches long, and Laura was 4.11 pounds and 17 inches long.
It was several hours before I could hold my babies because of the epidural, but when I did, it was scary. You could actually feel Michael breathing, his little chest going up and down. He was so fragile; how could he die? How could I not save him?
I remember the next day was one of the hardest of all. Dr. Bloom, my OB and the NICU doc came into my room with an update on Michael. Because of the decision we made, Michael was on no medication or ventilation of any kind, just monitors to see his progress which was stable but low. We discussed our options again. All three doctors agreed and supported our decision but said we could change our minds at any time. The NICU doc gave us a lot of support as well. We said we wouldn't be changing our minds. Then came the worst question ever asked of me in my life, "If Michael stops breathing, do you want us to resuscitate him?" What could I say? If I said yes, it wouldn't be living up to our original decision. If I said no, he would die. How could I just let him die? I'm his mother for God's sake. I couldn't say no; I just couldn't. I looked at my husband, and he was in tears. But he shook his head and said "no". My heart just sank. They gave us no time frame on how long he would live, just take it day to day.
The next few days in the hospital, we were shown how to feed him through a tube, but otherwise normal care was given to him. We (my husband more like it) had decided to lead as normal a life as possible ~ go on and do everything as usual and don't confine ourselves to home. That would probably be the best advice I would give to any any parent in this situation. We took our now three children everywhere ~ the mall, dinner, zoo, picnics, stores, friends' homes. We even had a family portrait taken. Because we had twins, we drew a lot of attention. Michael looked healthy on the outside and since Laura was small too, people (strangers) didn't know anything was wrong. They came up and admired the babies and in return, Michael received a lot more love than he ever would have if we stayed at home or in the hospital.
For the next 3 1/2 months, I wondered if this was going to be the day. He had to be fed every three hours and in the wee hours of the morning after feeding him, I would always hold him afterwards. I would just cry and ask God to take him, because I couldn't do it anymore. And yet at the same time, I felt guilty for not doing more to save him.
When Michael was eight weeks old, we took him back in to see Dr. Bloom for a re-evaluation. We would notice at times that his color would be exceptionally good, and he would be very wide awake and alert. Dr. Bloom reevaluated him and came up with the same results but had no explanation of Michael's good days, but said he had heard of this before. Again, he gave us the option to change our minds if we wanted to, yet supported our decision. I told him I felt like I should be doing more; I felt so helpless. I was holding Michael at this time, and he was asleep. Dr. Bloom said, "You're doing a lot for him. You're loving him and giving him peace and comfort. Just look how peacefully he lies in your arms." Those words stayed with me for the following weeks. They gave me strength, and I still think of them today for reassurance. He still suggested we speak with the Pediatric Cardiologist Surgeon for more information and peace of mind, and we did. The guy was an SOB (as I hear most surgeons are because they can't get involved) and was told us that he didn't like doing heart transplants on babies (but does) because it's a waste of time. There hasn’t been a 10 year study on heart transplant babies because they just don't live that long. He knew of one boy that lasted until he was 8, and although he had a lot of complications the whole time, he stopped taking his meds. He was at an age where he was more aware of his body and realized he was different than the other kids with a lot of physical restrictions. He rebelled. He also spoke of another 3 year old girl he was still seeing, but he considered her a sad case because her heart looked like one of an 80 year old. He felt very sorry for her and was expecting her not to live past 5. I am only repeating what he said; it left me heart broken. To make things worse, he asked me why I was feeding Michael? DUH! He's hungry, it's comforting, and I'm his mother for goodness sake. What am I going to do ~ let him starve to death!! Those were my exact words to him. Then he said, "Well you are only giving him energy and prolonging his life unneccessarily." I just started bawling then. Needless to say, our time was over with him . . .
On Sunday, September 4, I noticed Michael was sleeping a lot more and had suddenly lost a lot of weight. As of this time we hadn't said anything to Kenny about Michael's condition. He was barely 3 ~ how could he possibly understand. But on this night, I chose to tell him. He accepted my words.
On Tuesday, September 6 about 10 pm, Michael became unusually cranky. Holding him was the only thing that calmed him. So we did. For some reason, we couldn't go to bed that night. My husband and I took turns holding him. At 1:30 am, my husband was holding him, and I was in the kitchen. I heard the words, "Debbie, come here." When I looked out to him, he was crying and shaking. I ran to him. I knew this was it. We all just held each other. I looked at Michael. He was so peaceful, quiet, perfect and untouched. I remembered how Nathan looked. I knew then we made the right choice.
I looked at the clock; it was 2 am. My husband gave me Michael to hold. I realized then it was he who was holding Michael at his death, and I was glad for him. He had to work everyday of his little life. For him to have this moment was just the way it should have been. He waited one hour before calling EMS. EMS and the police were there within the hour.
EMS was wonderful. They never took Michael from me. They looked at him while in my arms and pronounced him dead. They left and the police officer went outside while we again waited for the funeral home. At 5 am, they arrived. They offered condolences and said whenever we were ready we could go. I would never be ready. Never. My husband motioned his head at me to go, because he knew I never would. We walked outside. Our house is on the corner and we have a street lamp there. That is also where the funeral truck was parked. I remember how quiet and dark the neighborhood was and was glad it happened in the early morning when no one was out yet. I finally had to hand him over. Another hard moment. They closed the doors and left. I couldn't cry. I just felt numb.
The next days that followed were horrible. The Rosary, the funeral, all the people. Too many. I wanted to be alone. Then we went home, for our other two children waiting for us to raise them and love them. They showed us that life goes on. I probably would have fallen apart if it wasn't for them. It's been three years now. Rocky, smooth, rocky, smooth............ Aside from having to cope with our own grieving, we have also had to explain it all to Kenny, as he grew older and wiser with more questions. I now worry about Laura. She is almost 4 and although she knows about Michael as of the writing of this story, she is unaware he is her twin. I need to tell her soon but am afraid of upsetting her. I have gone through so much of my own grief and depression, I don't want that for her too. I know she will at some point, for she is a very sensitive child. She has shown signs of something missing in her life. She has had moments of tears where she feels sad, she misses someone, she feels lonely. Yes, those are her words, when she was barely 2. How do I tell her that her other half died, without her dying too?
Well that's my story, sorry it took so long, but I feel a lot better now. If there is anyone who has a surviving twin that is or has going/gone through the same thing Laura is possibly going through, I would love to hear from you. I still carry some guilt for not "saving" Michael and I fear when Laura is old enough to understand more, she'll wish we had done more. I'm afraid she won't understand. I see her as my Miracle baby. Twins conceived at the same time. One healthy, one not. I see her as the luckiest one of all too. She got to live with Michael for 36 weeks before anyone else. Those are the days I wish she could remember.
Debbie

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