Helen’s Story

Like so many others, my husband and I had tried to have children without success. Then in April 2001, thanks to a great infertility clinic, we found out that we were expecting. From the very beginning I was afraid something was wrong. I had cramping that sent me to the ER just two days after I got the good news. Then spotting for three weeks. When the spotting started I rushed to my doctor who did a sono and assured us that there was a healthy heartbeat. A week later, another sono revealed two healthy heartbeats. We were overjoyed. I know some people find it overwhelming at first when they are told they are expecting twins but we were never anything but thrilled and excited. But still the fear persisted and I kept telling myself that it was just because I had had a couple of scares. I rested a lot, ate all the right things, and had been taking prenatal vitamins for two years. I am tall so the doctors thought I could easily carry both babies.

My OB was wonderful. He was a twin himself and he knew what we had been through to get pregnant. Every time I went in I would come out reassured. He always did a sono even though my insurance didn’t really cover them just so that I could see my angels moving.

At 19 weeks, while on vacation, I felt my babies kicking for the first time. I have never been so enthralled. I could, and did, lie for hours feeling those little bubbles of joy flutter through my tummy. In no time the kicks got stronger and I could distinguish which baby was kicking. They were so close together that they would wake each other up. It was so cute.

The exciting day arrived. I was 20 weeks and we were going in for our sono to make sure everything was o.k. and to find out what we were having. All our friends and relatives eagerly awaited the exciting news and everyone had called us to tell us their guesses of the sexes. The technician scanned the first baby (I always hated the Baby A and Baby B designations so we called Baby A Pooh and Baby B Tigger). Pooh was fine and he was a boy. The technician moved to Tigger and said “another boy”. We were so busy exclaiming about having two boys that we let her quietly continue with the sono. She scanned Tigger’s head and then moved on to his stomach.

I interrupted with, “Is his brain o.k. too?” I expected to hear a cheery yes but instead she paused. I knew in that brief moment of time that my whole world was about to change and that my fears had not been unfounded. I can’t explain how I knew but I did. I know I stopped breathing, my heart pounding, gripping my husband’s hand.

The technician said that our precious baby had enlarged ventricles in his brain. I asked how enlarged and she clearly didn’t want to tell us. We waited to see my OB. I sat in the waiting room with the tears streaming down my face hoping that he could give us some good news. I thought that there must be something that could be done; that surely the situation couldn’t be as bad as I thought is was. When we saw him I felt worse than ever. He was truly shocked although he tried to hide it. He was speechless and all the comforting, reassuring words I had hoped for never came. He simply said that we needed information, good or bad, we needed to know and that I had to see a perinatologist immediately.

We had decided against any prenatal testing because we had agreed that we would not consider an abortion under any circumstances. The maternal fetal protein blood test is not very accurate with twins and I had refused to risk a miscarriage by having an amnio done. The blood test would have revealed problems in our case but I am glad that I didn’t know any earlier.

I drove home from my OB’s office I screamed and sobbed. I should have pulled over because I could barely see the road. The babies knew and they started to kick up a storm. I told myself that I had to remain calm for them so I made it home and survived the next few hours when all our friends and relatives called to ask what we were having and I had to tell each of them what we had found out.

The next day we saw a perinatologist who told us that our baby had severe hydrocephaly or water on the brain. To have it so severely at such an early stage of gestation is rare and utterly devastating. Basically our baby’s brain was not developing as there was no room for it because of the fluid. We had researched the problem the night before and knew that there are some experimental programs that will install a shunt in a baby’s brain while still in utero. We asked and the doctor told us that the surgery wasn’t very successful because babies pull the shunts out and to operate with twins would most likely cause a miscarriage. He said that we needed to do an amnio right away to determine the cause if possible because it could be a virus which could affect both babies. This shocked me even more, Pooh looked fine and I had never considered the possibility that he too could have problems.

The specialist and his staff were wonderful. Kind and supportive and available whenever we needed them. He quietly told us about our options. We could carry both babies and hope to make it long enough that they would be viable at birth but with twins, a congenital problem and a severely enlarged head putting extra pressure on the uterus, he wasn’t sure we could make it. He said that if Tigger was born we could choose not to treat any other problems he might have such as a hole in his heart. Or we could have a selective reduction performed.

Selective reduction – what a sterile, clinical term. It sounds fairly inoffensive. Not like the most heart wrenchingly painful and horrifying experience you could possibly imagine. I didn’t know what it entailed, I had never given it a thought. So he told us: they inject potassium chloride into the baby’s heart until it stops and you carry both babies, hoping that the placenta doesn’t separate and put you into premature labor. I broke down at this point and told him that there was absolutely no way I would consider this option. Without actually saying it he was telling us there was no hope for our baby. I was bewildered. I could not believe that with everything that can be done for premature and sick babies these days there was nothing medical science could do for our baby.

The amnio came back – there was no genetic cause that they could identify but the alphafeta protein levels were sky high and they couldn’t explain it. They said that they would have expected to see spina bifida but didn’t so perhaps he had an open digestive tract or perhaps the entire pregnancy was in trouble. I flatly refused to believe the last possibility.

We were referred to a pediatric neurologist. Another kind and empathetic doctor who saw us immediately and stayed after-hours to answer all our questions about hydrocephaly and the outcomes we could expect for our baby. I went in with hope that he could tell us something positive. At this point we knew our baby would be handicapped and I was trying to think of the many adjustments we would need to make to accommodate this. What he told us broke my heart. I mean I literally felt a tearing pain in my chest. Tigger would most likely be in a vegetative state, he would be paralyzed, deaf, dumb, blind at best but most likely would not have any upper brain function. My child would never be able to tell me when he was sick or hurt or scared. He would never be able to walk or play or feed himself or even eat solid food. I asked how long he could live thinking that we would do whatever it took to bring our baby home so that he could die in peace surrounded by love. The doctor said that these days he could live 20 to 40 years if he survived the first year and the installation of the shunt. Twenty years in a vegetative state – it was at that point that I knew I had no choice. I couldn’t ask my beloved child to live a life like that and I truly didn’t know how I could manage to care for him and give his brother any kind of a normal life with no family around to support us.

As we left the neurologist’s office I told my husband that I didn’t think we could have this baby. My poor husband was so morally and philosophically opposed to abortion that he couldn’t agree to it. We tried to talk about it but there was nothing to say.

Four days after the amnio I woke with terrible cramps and rushed to the perinatologist’s office. He said I wasn’t in labor but that I had an irritable uterus and must stay in bed for a few days. I asked if this was a result of the amnio and he said no – it was stress. When my husband came home that night he said that he too had come to the conclusion that we should have the selective reduction and that he didn’t think that I could make it even close to term if I tried to have both babies.

We were referred to one of the best perinatologists in the Southwest. My perinatologist said that he could do the selective reduction for us but as we were now at 22-1/2 weeks he felt our best chance for our other baby was to see the most experienced doctor he knew.

We named our baby the night before he died – Luke Thomas (Thomas means twin). I did not sleep, I just held my babies and tried to remain as calm as possible. The procedure was very like an amnio only you absolutely must remain still and they leave the needle in for 6 or 7 minutes which they did not prepare me for. It was strangely peaceful and I know the instant he died. I felt my grandmother was with me and I know she came to fetch Luke and that she will look after him until we can be together again.

I carried my babies to 39-1/2 weeks despite all my doctors’ predictions that I would have them early. The first few weeks after the selective reduction were the most frightening of my life and I spent most of my time resting even though the doctor’s told me that if I was going to miscarry rest wouldn’t stop it. I was afraid that it would be difficult knowing I was carrying a living child and a stillborn child but it wasn’t. I am profoundly grateful that I got to keep Luke with me for as long as I did. For a while after I first found out about Luke I thought about dying because that way all three of us would always be together but I knew that I had to give my healthy baby at least the chance to live.

As I look into the face of my wonderful, beautiful child I ache because his brother isn’t here too. As I see Will develop I know that Luke would not have – he would never have been able to sit up or eat solid foods or say Mama. But in my heart he is perfect and that is the way I see him.

And so we live with the loss, the grief, and the guilt that our decision has brought. No one talks about Luke, it is as if he never existed. They ask when we will have more children – I don’t believe I have the courage. Strangers ask if Will is our first baby and I don’t know what to say. I usually reply that “Will is a twin but we lost his brother.” But it isn’t the same kind of loss and I wonder if I can use that term. Isn’t it misleading? It was our choice Luke died, not precisely by our hands but because we decided. How will I ever tell Will what happened?

My doctor was right when he told us that no matter what decision we made we would have regrets. I don’t know if we made the right decision and I will never know. For the rest of my life I have to live with that. Did we have the right to decide this for Luke? I don’t know, but we had the responsibility because we are his parents.

In that very brief state between sleeping and waking I still almost cry with relief when I realize that I have been asleep because surely it must all be a nightmare. Then I come fully awake and I realize that this is my life. And there is something so shocking about the fact that life continues to swirl around us and nobody else feels this tearing grief, this hole in their life, this void that should have held a laughing, active little boy.

Yes, as so many people tell me, I am supremely lucky to have Will and I treasure every single moment with him, more than they could ever know. I am thankful for every day I have him but I do miss my Luke so very much.

…mother of William Howard Ivan and Luke Thomas born December 28, 2001.