Sean & Aaron

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My husband and I had been married 9 years before we had children, waiting until we were ready and able to make that kind of commitment to a child’s life. We had our first child, Tamar, after a very uneventful pregnancy. I felt great the whole time with only minor nausea in the first trimester. I grew very large being two weeks overdue, and gave birth to an 11-pound baby after two days of labor with a c-section resulting. She was healthy and huge.

When she was 2 we decided it was time again. Some people thought that we should have had another earlier but the timing was right for us. We tried and once again became pregnant. When I was six weeks pregnant I began spotting very lightly which was very unusual. I called the doctor and he scheduled me for an ultrasound with the midwife the next morning. That night while lying in bed, the thought came through my mind that I was having twins and something was wrong with one of the babies. I dismissed those thoughts.

The next day the midwife did the ultrasound. I looked at the screen and saw two circles within my uterus and thought that there might be two. The midwife looked and us and said, “Do you realize there are two?!” I did. My husband did and that began a journey of a lifetime. Aaron’s lifetime. The midwife recommended the “Noble” book about twins (Elizabeth Noble’s Having Twins). I read it all that night which just scared me silly. The chapters on premature birth and loss of course hit right home. Your worst fears. Well I felt great so that was something. The doctor and his staff were amazed that I knew I was having twins. I also thought for a while that there might be triplets. My doctor was exceptional. He did an ultrasound to rule out triplets. He told me that he wanted me to have weekly internals, which I initially thought was too much. I was healthy. But I started those immediately and they continued to 20 weeks. He did not do them from 20-28 weeks because any stimulation there might bring on contractions. He said that by doing them so frequently he could keep a view on my cervix and be able to start me on terbutaline if necessary. I am so glad he was so involved; because I was 35, and carrying twins, so I was deemed high risk. He suggested an amnio, which I declined. We had the CVS test, which was high as it is if you are carrying twins. The pregnancy was wonderful. I gained weight appropriately and felt great. To have two babies moving around was glorious even though Aaron (Baby B) did not move as much. Everyone attributed that to the differences in the babies.

At eighteen weeks, after the suggestion of my doctor, we went  for a Level 2 ultrasound. The doctor doing that was also magnificent. I was lying on the bed having the ultrasound when all of a sudden he got quiet. He discovered that Aaron had a bilateral cleft palate and his wrists seemed contracted. He said that he could not determine what this was but because there was more that one anomaly that something might be up. Or maybe that was all. It was hard to know. Well, my husband is a geneticist so he immediately researched all of the probable causes. There were many so that was like looking for a needle in a haystack. So we were determined to do everything possible to have term twins.

I continued to have monthly Level 2 ultrasounds. At 28 weeks I started have twice-weekly regular ultrasounds and stress tests. They were mostly fine. Aaron sometimes did not speed up his breathing movements (they are practice for when the baby is born). He still did not move as much either.

All of the doctors thought that I would have the babies early like most twin births. Well, I went to term. The doctor would not let me go over 40 weeks and that was fine with me. I had gained 86 pounds by the time I was induced. I wanted to try to have a vaginal birth. My doctor was completely supportive.

So on February 2, I was induced. The labor moved more rapidly than my last and after a day and a half, I began to push. Two hours later my doctor suggested I rest. One hour later I continued to push. I could see Baby A’s head. But things just didn’t progress from there. My doctor suggested it was time for a c-section. I was disappointed but understood. I was prepared for the c-section and wheeled into the operating room. Moments later my husband and my doctor joined me. I was very tired and somewhat upset. But what happened next was pretty funny. With my first c-section I felt a lot of tugging and pulling to get that big baby out so I assumed I would feel the same thing. So I was waiting for that when I heard a baby cry. I thought to myself, “What is that baby doing in my delivery room?” I thought that some other baby was there. That is when we realized Baby A was born (who we thought was a girl was actually a boy – Sean). The room was full of hustle and bustle.

Then the room got quiet when Aaron was born. He was not well. He did not breathe well right away. They showed him to us and we were prepared for the bilateral cleft palate. It was severe. He had a full head of auburn hair. It must have been two inches long. They immediately took him to the NICU. They sewed me up and brought me to recovery. By the way Sean was 8 pounds 14 oz. and Aaron was 7 pounds 3 oz. Big big twins. The nurses thought I might hold the record at that hospital for biggest twins!

Our pediatrician came in when I was nursing Sean to give us an update on Aaron. Initially they thought he might be blind because he did not react to the lights. He was floppy with little muscle tone. His wrists were contracted. He had to be intubated because he wasn’t breathing well. The doctors thought that he might have a trisomy of some sort. They did a chromosomal test. We met with the neonatologist on duty and with the geneticist. They both came to the conclusion independently that Aaron probably had something called Oto-Palatal-Digital Syndrome (OPD). But it was so rare and was no test for it. They also told us only 9 babies had ever had this and that 6 were dead, two were institutionalized and the other was a boy in England with severe handicaps. We later found out that there are a lot of babies with this even though it is very rare. Case studies are the only way statistics are kept and how doctors are kept informed about any given problem. It turned out that a good friend of mine’s cousin’s son has OPD. They also told us that if Aaron had a trisomy there was nothing that could be done and since he was intubated a decision would have to be made about life support. Welcome to twins. . . It is ironic that an amnio would not have picked up on his many problems. It takes a major problem to show up on the chromosomes – breakage or something like that. His were intact as far as the doctors could tell. Meanwhile Sean was perfectly fine and thriving.

Two days later, Aaron made that life support decision for us. He spit out the breathing tube and continued to breathe on his own. He needed oxygen but was breathing. He was quite the little fighter. Steve and I decided that we would do everything for our son since he was doing so much for himself. I finally got to hold him one day later. Pure joy.

I brought Sean home and Aaron was transferred to a hospital where my husband happened to work. It made it very easy to visit him. My mother had been visiting so she was able to watch Sean and Tamar. I breastfed both babies although I had to pump milk for Aaron. It took a while for him to get a hang of the special cleft palate bottles. But he was aspirating milk. He was not gaining weight well. Finally a nasal tube was used for his feedings. A tracheotomy tube was put in because his oxygen saturations were not stable and doctors thought that his cleft palate was making it hard to breathe. A gastronomy tube was also inserted for his feedings.

After that surgery I finally got to hold both twins together. In the meantime we found out the “constellation” of problems that he had. He was still floppy so probably would be diagnosed with cerebral palsy, his brain was undeveloped, he never cried (even before the trach), the doctors were not sure about his hearing, or his eyes. His fingers, hands, and wrists were contorted. He would have needed many surgeries to correct all of his problems. His oxygen levels were much better and he was stable despite all of his problems so plans for his discharge were begun. He had many other problems including heart enlargement, an ASD, his fontanels were closing prematurely, hearing issues, and many more. He had several cycles of being on and off oxygen.

But what started the beginning of the end was that his heart was unusually enlarged. He had hypertension that was not controllable with medication. His kidneys were fine which is the usual cause of high blood pressure in babies. His heart just got worse and worse and soon he was on 100% oxygen. We were told it didn’t look good.

On Mothers Day, I decided that I would spend the day at the hospital. We got there and one of the doctors said that Aaron was dwindling. They gave him a shot of propranolol and he came back to us surprising everyone. His twin brother seemed to sense that something was happening. He was inconsolable and we could not put him down. The nurses said that a lot of twins have that experience when one of them is dying. We held Aaron, spent the night, and were waiting. We also had to make decisions regarding his care. What would we want the doctors to do if he coded. We had to decide that we would let him die peacefully. Since it was going to happen and there was nothing that could be done to stop it, then we could at least control how he died. We had the doctors institute a Do Not Resuscitate order (DNR). That was the hardest decision we ever had to make. How do you just let your child die? But his death was going to be peaceful, not with someone banging on his chest administering CPR.

But then Aaron made another decision for himself. We had been told that it would be a gradual death, where it might take three or more days of dwindling. Well, Aaron being the guy that he was, held on one more week and was fairly stable. Steve’s mom and my sister arrived. We were making discharge plans so he could die at home. It seemed that he waited until we had support and then quickly but gently died in the arms of one of his beloved nurses, Donna, on May 17 at 7:25 in the morning. It was just moments before we arrived. They had called us to come and we missed his death by minutes. We spent the morning with him, I washed his hair; we hugged and sang to him. The nurses took pictures that are hard to look at sometimes but I am so glad we have them. We were able to hold him up to our shoulder. We couldn’t do that before because of his cleft palate and tracheotomy. It was the hardest day of my life.

The nurses were wonderful this whole time. They had suggested baptism before he died, something that did not occur to me. They were so supportive and came to love him like their own. All of his nurses and several of the doctors came to his funeral. That blew me away. The nurses arrived each carrying a white rose that they put together in a vase next to his coffin. It was absolutely beautiful. I can say that I have never felt that kind of support in my life. It was stunning. I can say that we actually had a good NICU experience despite the fact that Aaron died. No one could want more for a child who was unable to come home.

We then had to tell everyone including Aaron’s sister Tamar that her brother had died. She wanted to know why. Good question. We are still struggling with that but we have found a doctor in Oxford, England, who does research on OPD. We are not even sure if that is what Aaron had but we will find out. We approach this as something that we can do to spread information about OPD. His case was a mystery to his doctors. He defied everything they thought about cardiac issues. But we knew him as a feisty little guy whose smile, as crooked as it was, could light up a room. He lived 3-1/2 months of the most precious time because my family was whole. He showed me how good a mother I could be. His time here was full but too short. I read about moms and dads who never get to know their baby and I find that sad. I had a term baby, large, but I still lost him. But we got to know him and that was the treasure of my life. He lives on in his twin brother Sean, and older sister who love him and refer to him often. It has been hard but I wouldn’t have not had him for anything – problems and all. I went to a support group for a while but almost all of the women had lost a singleton, not a twin. There is such a difference when a twin is lost and that is why CLIMB’s newsletter is so important. I cry and cry when I receive it but it is so helpful. Mostly what I learned from that support group is how poor some women’s treatment is when they are pregnant. I thought initially that my doctor was being too careful but I now know what good health care is.

Recently Sean (who just turned three) has been asking about Aaron including asking if Aaron would come home when he gets better. That one was a shocker. He says he misses Aaron. But in some ways it gives us comfort to know that Sean senses Aaron and that is beautiful. As painful as those questions are I am so glad he asks.

Vicky

Update

On May 17th , it is going to be the five-year anniversary of our son Aaron’s death. Because he has been dead longer than he was alive, we fight against making that the center of our memories. We fight to remember him, as he was alive. His life gave us so much that we can’t even begin to count the ways. The gratitude I have about this is my guide. It has been a very long five years but as countless others on this site have pointed out, it feels like yesterday. I am glad it does. It keeps his life fresh and near.

I grieve in different ways but sometimes the realization that one of my children is gone, comes back as strongly and powerfully as if it was yesterday. I still can’t believe it happened and I am okay with that. I have always accepted my grief. I have never feared it. I read early that one should feel the passion of their grief. I have. I let Aaron guide me with that. He is still my child. Our other children speak of him often and seeing his twin brother’s grief is hard. But that is what being a parent is. You live with your pain and your children’s. Our older daughter doesn’t remember a lot of the details, as she was only 3-1⁄2 when he died. But she remembers the love. Funny how that works. But that is okay and that is what I want her to remember.

He is my child. He guides me in ways I cannot count and I am glad I had him. Really simple in some ways. I allow it to remain this simple. So after five years without him, I can say that the pain never goes away, it just transforms. It transforms itself, my family and me. Children do that whether they are with you or not. I, after five years, have found the simplicity of his death, and the beauty of his life. I am glad of that.

I wrote this a month or two ago about a day in April 1999 that my son looked into my eyes. It fits.

Once – A Moment

Spring is the cruelest season given and then stolen away.
Your eyes caught mine and I saw treasure not possessed, so blue,
Beautiful and wide unable to shut tasting the world
Staring at me smiling and grinning
Your crooked little mouth offering me everything I could ever wish.

The clash and buzz and vents humming
The wasted noises ensnarled us, yet silence marked our world.
You in my arms agonistically nuzzling serenity
As I hold you and love you and you smile.
This simple exchange that ruled my world.
You smiled and I surrendered tears, pendants of pain and love and loss and hope

As blankets slipped from under your feet
Dropping to reveal soles and toes so merely pure and honest.
I bound you vanquished in my heart and my arms
Keeping you safe and near.

A long April promise that held hope and babies
In the gasp of spring and sunshine where
Flowers blossomed in rueful gardens watered with pain and sorrow.

I hold this moment above the others
For I still hoped.