Wednesday, March 17, 2010

Saving Henry, Saving Lambs

Last week I was listening to Bob Edwards on the radio in my car after dropping Julia off at school. Working by myself all day, sometimes the only voice I hear is that of the one coming from the radio. Bob Edwards with his soothing tone and great interviewing skills has been a favorite voice for many years. I don’t always have interest in his guests but I usually listen, none the less. Last week’s guest was Laurie Strongin, the author of a new book called Saving Henry. Henry was Laurie’s son who was born with Fanconi anemia, an almost always fatal illness. I don’t always listen to stories like this but this one woman’s conversation which was about the life and death of her child at the age of seven had so much joy mixed in with what I initially thought would be pure sadness. Like Laurie, my family and I spent many, many days in the NICU at Tufts NEMC and on the Pediatric Surgery Recovery Floor in the three years after Julia was born with hydrocephalus. Luckily, Julia’s brain condition was operable and except for some things that are very difficult for her, she appears a normal child.

Henry and his family were not as lucky as we were and he died at the age of seven after multiple surgeries, an unsuccessful bone marrow transplant, and his mother Laurie and father Allen Goldberg’s nine attempts to produce an embryo that would be a match for him to have a successful bone marrow transplant. Many times, I almost turned the radio off because the conversation was hitting too close to home and was making my heart ache. But I kept listening because Henry’s mom kept talking about what a great kid Henry was, how he was bigger than life, and how he continues to live on in her family’s life, eight years later.

I can’t imagine the grief that overcomes a mother and father when their child dies. I read stories in the paper and my heart skips a beat and goes out to the family – the families I do not know. Every child, every person is a child of someone, a son or a daughter who is loved by family and friends, no matter their problems and quirks. Before I had Julia, I do not think I felt quite the same - not as compassionate as I am now.

And so Henry and his family, people I do not know, became the focus of my thoughts for the day and this past week. I marveled at how his family has started a Foundation called Hope for Henry to help to make their lives happy while being in the hospital. What a great thing to do for others who are in similar situations. When Julia was hospitalized frequently in the first few years of her life, I know how we all looked forward to the moments of the day when the Child Life Specialist at Tufts/NEMC came down to her room, bringing videos, books, and toys to entertain her. Those people were so supportive and caring and helpful to all of us (as were the doctors and nurses too) as we struggled through surgery and recovery. They have seen it all before but for us, it was new. We were so lucky to be able to get care for Julia at such a caring hospital.

Later in the day, after I had resumed my "mommy detail" Julia and I arrived home after dark to the smell of the wood burning in the woodstove and the welcoming baaahhhh of our newest bottle lamb. This little twin ewe lamb was born during the last big snowstorm. The Farmer found her in the snowbank, not being attended to by her mother. She was pretty much frozen and barely breathing. He brought her home and she lay in front of the woodstove as we watched the Olympics. Slowly, the little lamb thawed out and came to life, lifting its head after a couple of hours. When the lamb was strong enough to go back to its mother after she was fed, The Farmer took her back to the barn to see if the mama would accept the lamb. Alas, the mother still did not want her. Perhaps the mother sensed that there was something wrong with the lamb. We do not know.

The lamb returned to the house for further nursing from her humans. For the next few days, the little lamb lay in front of the woodstove keeping warm. She became stronger and stronger but couldn’t stand or walk. She had such spunk and personality and a rather loud baaaaaahhhhhh that we decided she could have a name. As she was born during the Olympics, we gave her the rather regal name Olympia. Naming a sheep is a huge decision for us. When a lamb gets a name, it gets harder for us because they become close to us, almost pets. When something happens to a sheep with a name, we take it harder. Not everything here on the farm is sad but so many things are out of our control. It is easier emotionally to keep our distance from all the personalities of the animals and only have them be numbered, not named.



As the week progressed, Olympia became stronger and stronger. If we pulled her up on her feet, she was able to balance and walk but her legs kept slipping out from under her and she would become splayed with all 4 legs pointing out. We massaged her legs and ankles and after six days, she was able to stand on her own. Olympia has become one of our lambing successes. It makes us feel good.

I can’t imagine how great a research doctor must feel after they spend years developing a technology that can save a child’s life. Henry and his family endured many years of tests and surgeries. As Laurie was speaking, I thought to myself, would I put my child through experimental procedures, only to be disappointed and grief stricken because my child did not survive? Laurie was positive that she and her husband had made the right choices. Although Henry did not survive his fatal condition, children now are able to survive when born with Fanconi anemia. Through Henry's life and his doctors, he continues to live on.

It is easy to be judgmental about a person or situation you are not close to. Would I have strived so hard to keep my child alive? I don’t know that answer. As the day and week wore on, I kept thinking about Henry and his family. My mind wandered and I began to think about the children who were born with hydrocephalus over 50 years ago when there was not a cure for it – before shunts were invented and the excess fluid on the brain continued to grow. Infants with hydrocephalus did not survive and grow into young girls and boys who laugh and sing, who love chocolate ice cream, who need help with their homework, and stay up too late at night. I am so thankful for the families like Henry’s who came before Julia. I am thankful for the doctors who developed the amazing shunt technology that has made Julia’s life possible.

When we have our little farming successes, it makes us feel good. Probably not as good as a doctor feels who has spent his or her life working on a new surgery technique, but good none the less. But lambs are sheep and they keep growing. Olympia is still in the house, running around with the dogs close behind. She’s got to make the transition to being a real sheep this weekend. We are putting it off because it’s difficult – not as difficult as seeing your child go to college – but heart-wrenchingly difficult none the less because things happen to sheep as they live out their lives on a farm. It is the reality of raising farm animals and even though we have been doing it for years and years, it isn’t easy to lose a sheep or lamb. It is real life though and farming is the process by which people eat meat, even though most people don't think about the source as they pull their shrink-wrapped beef or chicken from the grocer’s refrigerated case.

p.s. When Olympia finally moves to the Great Outdoors, I've really got to start scrubbing those walls!

17 comments:

Leslie said...

Thank you for the thoughtful essay. You gave me something to chew on today.

Wooly Knits n Bits said...

Thanks for sharing Henry's story. I too, would allow experimental research on my child (or myself) as long as I was well infomed. I would want to think positively and always hope for the best outcome possible. I would want to surround my child with positive energy and hope, always hope.

mascanlon said...

Thank you for sharing all these special stories today. A half an hour ago my 15 yr Downs syndrome granddaughter Caroline left to fly home from SoCal to KC alone. Spring Break with Poppy and Nana was her first big adventure on her own without Mom or dDd or an older sibling with her. This past week has been a joy as we went to the beach, ate out and shopped at Target with "real" credit cards (gift cards) 50 years ago her life would have been very different. And ours an emptier place.

Jody said...

such a poignant and important post - thank you so very much for stretching my heart strings this morning. You've given me much to think about, even more to be grateful for.

Lynn said...

Thank you. Just ... thank you.

Sarah said...

I'm not sure I could have listened to that story. As you probably know Lou had a birth defect as well that left her in the hospital on the brink for weeks. We still give to the Child Life program at Dartmouth.She had experimental treatments that didn't work as well. Finally, a make or break decision healed her. at Easter.
http://maymomvt.blogspot.com/2008/02/embracing-life.html

Thanks for sharing the story. I, too, have new empathy for so much in this world now.

Michele in Maine said...

Thank you for your thoughtful, poignant essay today. My daughter has some special (if invisible) challenges too, and it really gives one pause to hear another parent complain about their child's tantrum, or difficulty, and know how lucky they are to not have to put a toe into the world of serious children's illness or disorders.

Olympia is too precious! That would be a very hard transition to make!

Mereknits said...

Thanks you so much for your wonderful blog. Julia is indeed lucky to be born recently. When I was a new OT just out of school I worked in a state institution in Virginia, I met several people with untreated hydrocepalus, they were amazing in the fact they survived. They had a dificult life and still amnaged to find joy. That and many other things I learned in Virginia were the experiences that made me the therapist I am today. Good luck to Olympia, I hope she always stays special to you.

Deborah said...

I, too, owe my life to Tufts Medical. I had a bone marrow transplant from my brother and I think of those before us. During my cancer battle I did undergo test trials because my cancer was rare. When you put it in a big picture it is overwhelming. Good luck with Olympia!

Missouri Gal Nicole said...

My husband lost both of his children. It was horrible and I don't know how he gets out of bed everyday but he does. I've found him, on the floor in a ball, bawling his eyes out. My heart breaks for all families that lose loved ones, especially children. God Bless them!!!

Kathie said...

very touching story told from the heart.
I fully understand and yes I thank good for the inventors of shunts too.
and for the medical team at MMH NIC unit every day
the little lamb is adorable, glad you had another success story to tell.

Anonymous said...

I cried...elizaduckie

annie said...

Such a moving account..thank you. You may be interested in reading about Kendall Atkinson at KapsforKendall.com and at katafoundation.org. Kendall, who lost her battle to Fanconi Anemia at age 20, was a knitter. Her younger brother Taylor also died from the disease at age 18. A foundation was begun that has raised funds to support research of effective treatments and a cure for FA. Through The Knitty Cat, the LYS where Kendall and her mother knitted and shopped, many of us have participated in Kaps for Kendall and fundraising efforts.

Anonymous said...

Thank you for sharing your essay with us. I have a son with hypochondroplasia, a form of dwarfism, and know what its like to try everything to help your child. He was on growth hormone injections for 3 years until we finally got the correct diagnosis. Through it all he remained happy and optimistic that this was his "cure" and when told it didnt work he just smiled and said "oh well, I guess my step stool is really going to come in handy!". Kids are resiliant, bright, beautiful, and so understanding. What a joy!

Laurie said...

Lovely, thoughtful post. Thank you for reminding me that, despite my passion for border collies and all things fiber, I could NEVER raise livestock of any kind. They'd all be named and living in the house within a week...it would just be b-a-a-a-a-a-a-a-a-ad...

My heart and prayers go out to all the brave children and parents for comfort, peace, and happiness...and miracles, lots and lots of miracles.

Anonymous said...

Thank you for sharing Henry's story in such a thoughtful and compassionate way.

My daughter had the same disease that Henry had - and she also had hydrocephalus. You might find it interesting to know that there are several FA kids out there who also have hydrocephalus. So your story is connected to Laurie's in even more ways than you knew!

Anonymous said...

Your essay left me crying. We spent most of this winter in hospital, fighting cancer for my 15 year old. We too are beyond thankful for those families who have gone before, giving the medical professionals the knowledge they needed to be able to treat our daughter. My heart breaks for their losses. Thankfully, my daughter is in remission but all those (to me) unknown children who were born too soon for a solution to their cancer will forever be part of myself. Linda