Ben has 3 older siblings, who were born in 1990, 1993, and 1995. Ben was born in 1996.
Let me preface this with a curious story. While I was pregnant with Alex, who was born in 1995, I saw the same doctor I saw for the beginnings of my pregnancy with Ben. Around the corner, in the same building as my OB GYN's office was a small office with a little window where you could peek into a dark, windowless waiting room with brown funiture and a little box of toys in a corner. Pediatric Cardiology, it said on the door. I remember passing that door every time I walked to and from appointments when pregnant with Alex, and I remember pitying the parents and children I saw through the window. They looked worried and depressed to me. What a sad profession, I thought, and what a horrid fate for parents to have to grapple with. ...Little did I know.
My pregnancy with Ben was troubled with cramping and discomfort for the first three months. Every morning I woke up thinking I was miscarrying. Perhaps the body senses chromosomal abnormalities and tries to shed the pregnancy? I don't really know, But consider this: my pregnancy with Ben's older brother Alex (born 1995) was a nine month obstetrical nightmare (likewise with cramping). It ended in ante partum hospitalization and bed rest-- to say nothing of a near loss of both mother and baby (with placenta abruptio at 34 weeks). To put it mildly, I wasn't really supposed to have another child. Alex was 9 months old when Ben was conceived and he was all ... eh... kinda... sorta... not really planned. But happen it did. :P
In April 1996, I went in for a 17 week routine sonogram in order to--as the Dr. always said--make sure all the parts were there. And that of course turned out to be the most ironic thing she ever said to me.
Husband and older kids were in the exam room during the sonogram. They were there to see their new sibling, but since it took so long (first clue that something is wrong!), the family leftto play in the waiting room while the technician finished up with me. After she finished, she asked me, "Are you seeing a doctor today?" (Second clue that something was wrong!) The first thing the doctor said to me when she came in the door was, "We have some bad news on the sonogram, do you want me to go get your husband?" My reaction was, "If you have something to say to me, say it right here and now!" "Well, " she said, " the baby has a cleft lip, possibly a cleft palate too, but worse than that, the heart is not fully formed. Walls and valves are missing." She did not know whether a baby with such a heart could live. There was also a question as to whether the baby had a stomach. The technician had not seen one on the sonogram. The doctor could help no more because she knew no more. Examinations needed to be done by a cardiologist and a perinatologist to establish exactly what was going on.
It was of course Friday afternoon at 4:30. Things like that always seem to happen late on Fridays, and nobody was available to give any more information on the topic till the following week.
That was the longest weekend of my life.
Now, lest you think me so terribly selfish that I can only speak of this from my own experience and not from the consideration of anyone else in the family, let me assure you that I really am that horribly selfish. I don't remember anything that weekend but my own feelings. I cried, I tried to sleep, I tried to play with the kids, nothing helped, nothing mattered. I don't remember who talked to me or if anyone comforted me in person, in email, or by phone. This is not to say that there weren't others. I am sure there were many, there is a forg of memory that says they were all there, but I don't remember them I also know that this impacted my husband severely, as well as our 3 little children, but I remember nothing of discussing anything with him, and as for the kids, we must have said something to the oldest, and he must have had a reaction, but what it was, I would have to ask him, if he remembers. What I do remember is that I dug a whole 20 ft x 7 ft vegetable garden from sodded grass in the back yard, just dug and dug and dug, and while that didn't feel GOOD, it exhausted me, and kept me near my children who played around me in the sandbox and on the swing set in the back yard.
We had only been in Kalamazoo for 2 years and were not well connected, but I do remember one person: my dear dear friend Lorraine. She had heard from someone somewhere (perhaps me in email?) and she just stopped in at the house that Saturday morning. I sat like a zombie, trying to feed my one-year-old with a spoon, except, I wasn't really doing anything. Alex was trying to eat, but I didn't bring the spoon near. But she, practical and helpful as she always is, sat down, took over the spoon and fed Alex, while I ... I don't really know what I did. I probably just sat there. She was the biggest help anyone could ask for, really. Someone who just came and sat with me, and who filled in where she saw needs. (And I might add that she had kids the same age as mine, so she was a busy mom, but she had thoughtfully left them at home that first morning.)
Sunday we went to church and that was disastrous for me. I don't want to say anything bad about that church. Its people were very supportive later as we needed tons of child care for the older kids during hospitalizations, but at this point, their service simply did not match my emotional state well enough for me to stand it. I remember we sang (and I have hated the song [and unfairly so] ever since) "What a Friend we have in Jesus" and my head was ready to burst with protests to every piece of lyric in the song. Before the song was over, I walked out of the service. No, not angry. Not ... not really anything but numb, confused, and not in a hip-hop churchy upbeat mood to express my 'joy in the Lord'. I felt lost, and I was angry, perhaps, that the church service at that moment failed me. HOW could they have a service that did not address the emotional needs grieving persons who came to worship? Could you only go there if you were happy? That day, I longed back to the High Mass Lutheran services I occasionally attended in my childhood. But it wasn't this church's fault. That was just church in America. Besides, I really felt that this was God's fault. I did not understand why this baby had to be afflicted, why my family had to suffer, why we all had to feel so sad and lost and overwhelmed. My lostness --the shock of carrying a baby that might not live, that might not this, that might not that... and the awful, awful wait of weekend-- felt unbearable, and yet unbearable is the wrong word. Of course it was bearable. I bore it. But I had a terrible sense of wanting to run off somewhere, only the 'problem' was inside of me. There was no escape. What was this thing?? One other thing we did that weekend was give Ben his name. We knew he was a boy, and we knew that he was a person, and as such, talking about him and discussing how to love him in the future was helped by identifying him.
I might add, that that weekend, we also informed grandparents of the situation we found ourselves in, and I don't think either side had anything to add or offer that was helpful at the time. Both sides of grandparents were thousands of miles away, and I think they were frightened and overwhelmed. They had no experience with which to reach out and support us in this situation. They were grieving for us and needed time to process this. In some ways when our grown kids are struggling, we parents can sometimes hurt so much too that if we do not have the reserves and energy and wisdom to a glimmer of hope or a solution , we may not always be the best comforters for our grown kids. We are too emotionally vested to be able to do so.
Monday came, thank God! The appointment was not till noon, and it almost killed me waiting for it. In hindsight (now in 2014) I realize that was amazingly fast for pediatric cardiology to fit us in so quickly... but I was ignorant of the grace extended to me at the time. I should have been very very grateful to both doctors for taking what I later found out was their LUNCH periods, to check out my seemingly ill favored pregnancy.
The pediatric cardiologist was a cheerful and kind man. He did the echo/sonogram and he instantly knew what the heart issue was. He saw that sort of hearts all the time and was able to say that it could be repaired with open heart surgery with 95% success rate. He also said he was 66% sure the baby had Down Syndrome.
| 25-30 % of babies with Down's are born with a heart like this- missing atrial and ventrcular walls and having fused mitral and tricuspid valves |
The pediatric cardiologist (a man who became my 'medical best friend' for the next four years following) kindly told us that he too had a child with special needs and that of course it was not what he and his wife wanted, but that our baby could live and have a good life and that there was a life ahead to look forward to, and a future that was not as dismal as it seemed just then. --- Those words were golden, and I still remember, even more than his words, his compassionate thoughtful confident eyes looking straight into mine as he squatted in front of the chair I sat on. It was the kindness, yes... but more than that, it was his confidence that energized me and gave me hope. Never again did I feel as bad as I did the weekend before we met this man. While the mountain ahead of us was tall and steep and seemingly insurmountable, we had met someone who had scaled it, and who was extending a hand to help us do the same. All this was done locally in our little town of Kalamazoo, Michigan.
We went for a second opinion at University of Michigan. Not sure why we did so. I was not looking to abort this baby no matter what. From childhood and up I had always felt that abortion was wrong. And no, do not blame my parents. It was an internal thing with me. Still is. But then, I don't even like to kill flies and I cringed as a 10 year old and forever hated one of my friend's father because he drowned a whole litter of kittens one year.
Our second opinion was a carbon copy of the opinion given in Kalamazoo, and really University of Michigan did not have any additional equipment or expertise to offer that Kalamazoo did not have UNTIL this baby would need open heart surgery. Ann Arbor was a huge hospital complex then and even bigger now. My daughter had already had surgery there at 11 months, so we already knew the place. It was competent, professional but not warm and friendly and homey like Kalamazoo. (I will discuss in another blog the specifics of my visit there). So since Ann Arbor was 90 minutes away and the little Methodist Hospital in Kalamazoo was 15 minutes away, we stayed in Kalamazoo for the duration of the pregnancy.
Our second opinion was a carbon copy of the opinion given in Kalamazoo, and really University of Michigan did not have any additional equipment or expertise to offer that Kalamazoo did not have UNTIL this baby would need open heart surgery. Ann Arbor was a huge hospital complex then and even bigger now. My daughter had already had surgery there at 11 months, so we already knew the place. It was competent, professional but not warm and friendly and homey like Kalamazoo. (I will discuss in another blog the specifics of my visit there). So since Ann Arbor was 90 minutes away and the little Methodist Hospital in Kalamazoo was 15 minutes away, we stayed in Kalamazoo for the duration of the pregnancy.
Those months from April till Ben was born 5 months later in September were calm, but it was the sort of calm that is in the eye of the hurricane. Still, I am pretty good at compartmentalization, and I took the peace I could get before the onslaught of the winds. One of my strengths is preparation, and prepare I did mentally, physically, emotionally, spiritually.
It was my only pregnancy where I gained practically no weight to speak of. I was 34 years old and in good health and spirits. I had a 6 year old a 3 year old and a 1 year old and, yes, while it was all very exhausting to deal with it was not a bad time because of the positive supports around me. I went in every month (more often towards the end) for a perinatology/cardiology visit. The pediatric cardiologist was always there, always supportive, never in a hurr, and he was very kind to my little kiddos. In fact, I would go there with my 3 older kids, 2 in a double stroller and they just sat, patiently waiting and waiting through appointment after appointment. (Good training for what they would have to do [and did amazingly well] for the coming four years). Ben was safe during the pregnancy, it was the prognosis after birth that was overwhelming. He would, I was told, need to be born and go in the NICU. He would, I was told, also need an open heart surgery at about 3 months. He would, I was told, have to wait with all his repairs for cleft lip and palate until the heart situation was stabilized.
It was my only pregnancy where I gained practically no weight to speak of. I was 34 years old and in good health and spirits. I had a 6 year old a 3 year old and a 1 year old and, yes, while it was all very exhausting to deal with it was not a bad time because of the positive supports around me. I went in every month (more often towards the end) for a perinatology/cardiology visit. The pediatric cardiologist was always there, always supportive, never in a hurr, and he was very kind to my little kiddos. In fact, I would go there with my 3 older kids, 2 in a double stroller and they just sat, patiently waiting and waiting through appointment after appointment. (Good training for what they would have to do [and did amazingly well] for the coming four years). Ben was safe during the pregnancy, it was the prognosis after birth that was overwhelming. He would, I was told, need to be born and go in the NICU. He would, I was told, also need an open heart surgery at about 3 months. He would, I was told, have to wait with all his repairs for cleft lip and palate until the heart situation was stabilized.
It was at that point that I was completely convinced that the only way we could get through this as a family was to homeschool, so the kids could always be with me. -- Second concern in favor of homeschooling was germs. I became (as I will tell in future blogs) a bit of a germo-phobe for a while, keeping my kids isolated so they wouldn't drag home the latest fads in colds and stomach bugs. It was clear to me before Ben's birth, and it was violently demonstrated after his birth, how he was a complete magnet for every bug that came near him, and more than once did he almost perish due to biological diversity in the microscopic and submicroscopic world.
Interesting world where you start out pregnant (assuming you are a woman :) ) thinking, oh, I have two boys and a girl, another girl would be nice. Then during the sonogram you are told, it's a boy. OK, so that is fine. Who cares if it is a boy or a girl, so long as it is a healthy child? --- OK, the child is not healthy.... what do you say next? ... so long as he lives?? OK, he might not survive any number of things ahead of him?? NOW what do you say??
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