Momhood

Motherhood, insanity and everyday life.

Thursday, November 16, 2006

Andrew's Story

The following story is sad but true. I generally stay away from sad topics, but it just seems like the right time to talk about a very important person in our family. Happy Birthday, Andrew. We love you.

On November 18th, 1986, I gave birth to our first son, Andrew, via “crash” c-section. My husband and I had rushed to the hospital because my water had broken and we knew that something was wrong. When we arrived, the doctor on call hooked me up to a fetal monitor, gazed at it with a deep look of concern and then put her hand on my leg and said: “I’m sorry, but there’s no heartbeat.” Seconds later, she saw what she called an “agonal” heartbeat and I was rushed into an operating room where Andrew was delivered. For eight minutes, he did not breathe. Then, he barely began to respond. They hooked him up to a ventilator and put him into the neonatal intensive care unit.

As the day wore on and my anesthesia wore off, we found out that despite my unremarkable full-term pregnancy, I had something called vasa previa which essentially meant that part of the umbilical cord had branched off separately. Often, women will have vasa previa and it won’t be discovered until after they have a healthy delivery. In our case, it was different and oh, so wrong. My water broke at the exact point where the separate part of the umbilical cord had formed. Since it was a weaker part of the cord, it sheared and Andrew lost blood and therefore oxygen. The doctors assured us that there was no way to have known that would happen. We, and Andrew, were just unlucky victims of the odds.

Andrew stayed in the NICU unit where a battery of tests was run. Neuro specialists were consulted and within a day or two they told us that Andrew had virtually no brain activity. They and all of the medical experts felt that leaving him on the ventilator was to keep him alive by extraordinary means. And so, we made the gut-wrenching decision to have life support removed from our newborn son. First, we asked a Catholic priest to baptize him. The medical staff then asked if we wanted to be there when they removed the ventilator, but I couldn’t do it. The idea of watching my son die was simply beyond unbearable. And so we returned to my room and waited. And in a cruel twist of fate, Andrew started to breathe on his own. He was sustaining his own life without a ventilator. We suddenly found ourselves caught in the parental hell that is grieving over the fundamental loss of a baby while wondering why God was keeping his body alive.

As the days and weeks passed by, we started to adjust to the idea of parenting a developmentally disabled child. However, his disabilities were so severe; they were beyond that which we could handle in our own home. We spoke to social workers and staff who unanimously advised us that bringing Andrew home would rip our marriage and our future family apart because he would require around-the-clock medical care. He was likely blind and deaf, would never walk or talk, could not feed from a bottle or ever swallow food and his cognitive age would always hover around 1-1/2 months. He would never be able to recognize or acknowledge us. Essentially, he was and always would be in a vegetative state.

We were in such a fragile state of confusion about what to do next for our child who was essentially living in the shell of a body. At one point, we petitioned the hospital ethics board to ask what, besides removal of the ventilator, were considered “extraordinary means.” It was an agonizing path for parents to take but we did not want Andrew to suffer needlessly if his time with us was limited. The board basically said that all current measures should continue. We were comfortable with their advisement. Next we faced the decision of how to care for Andrew for the rest of his life.

We found out that our options were to find a foster family specially trained in caring for developmentally disabled individuals, or apply for a placement at a state-run center about an hour from our home. We chose the latter, feeling that they would be better equipped and trained for his care. That would also allow us visit him in comfort and convenience and give him access to the very best therapies and medical care available without having to leave his surroundings. Administrators from the center visited Andrew at the hospital. His appearance was deceiving since he was such a beautiful baby. His constant seizure activity had not yet started and years of immobility had not yet wracked his body with spasticity and brittle bones. They found that he was appropriate for placement and on January 7th, 1987, after he was fitted with a feeding tube, we drove him out to the center.

The initial days after January 7th are a blur. I remember visiting Andrew every weekend for several weeks to make sure he was getting the best care possible. We found the center to be a place filled with residents that had a wide variety of horrific disabilities. Some of the older residents had Down’s syndrome and had been placed there decades prior. (Something, of course, that would not be done today.) Others had dramatic and horrible birth defects. Still others were victims of strokes or near drowning or asphyxiation. These were the kids that you don’t see in the Special Olympics. They were special alright, but without mobility or communication or many very basic human skills that would allow them to interact with or benefit from mainstreaming in the community. Frankly, it was disturbing to go there. Not because it was a depressing place, but because the residents were so deeply damaged physically and developmentally that the first instinct was to turn away.

The gentle and competent staff embraced Andrew with enthusiasm and joy, something that had been woefully missing since he was born. To them, there was little point in discussing what was wrong with him, because he was what he was. Their goal was to take this tiny, damaged infant and treat him with the utmost dignity, respect and love that was possible. To this day, I think of them as angels on earth because of the way that they swooped down and gently cradled Andrew when we, the parents, were at our most vulnerable.

Weeks, months and years went by. When Andrew was first born, one of the neonatologists estimated that he wouldn’t live beyond five years, due to his many medical complications and his potential for life-threatening respiratory issues. He did indeed suffer through many bouts of pneumonia when he was young. Once Andrew passed his 5th birthday, we stopped asking for long-term prognosis. It seemed obvious to us that God had a purpose for Andrew here on earth and although it was beyond our comprehension, we just had to do our best to keep him comfortable and well cared-for to the best of our abilities. We feel very strongly that the center has fulfilled this mission for Andrew and for us.

Andrew turns 20 this weekend. His birth and his life have changed us immeasurably. My husband and I are better parents to our two other children who are now 19 and 14. They have become very compassionate, kind and sensitive young adults, no doubt as a result of visiting their profoundly developmentally disabled brother regularly since they were born.

When I tell people the story of Andrew, I usually condense and soften it. Not surprisingly, it’s a conversation stopper and it’s the difficult answer to the question: “So, how many kids do you have?” Mostly I do this to try and protect the person asking because sometimes Andrew’s story elicits tears. Most of the time, it makes people really, really uncomfortable because they have no idea what to ask next. I completely understand that reaction and work really hard to avoid it. Nevertheless, I always try to tell people that Andrew’s birth was both the most tragic and beautiful thing that has ever happened in my life. While we were still reeling over the blow that life had dealt us, friends and family from far and near descended upon us and helped us through that first very difficult year. Their love and support has touched us to this day and continues to sustain us and Andrew.

19 Comments:

At 8:11 AM , Blogger Manic Mom said...

OMG. Wow. I can't even think of the words I want to say. This is one of those posts that makes me want to reach for the phone to call you, or see you on the street to hug you.

I can't think of what I want to say. I am stunned and the beauty and the sadness of it.

You are a strong, loving woman, and an exceptional mother.

 
At 9:16 AM , Anonymous Cindy Paris said...

Oh Karen! Thank you for sharing this poignant story! I also had a vasa previa baby. His name was Nathan. He was born in 1996. We had the same agonizing experience that you did - uneventful pregancy, and that rupture at term. We took Nate off the life support too, after about a day and a half. His organs were failing and we didn't want him to die alone in that crib. He breathed on his own for 3 hours and then died in our arms, taking our love with him. I've never forgotten him, not even for a moment.

Just wanted you to know that you are not alone. In 2001 a group of vasa previa parents organized the International Vasa Previa Foundation to raise awareness and eliminate the deaths and disabilities this hearbreaking condition causes. We have members all over the world, attending medical conferences, participating in research, and helping to schedule educational hospital events about vp. These days many vp babies are prentally diagnosed and saved from the tragedy Andrew suffers. But still many are dying due to the lack of awareness.

We'd love to publish your story on the IVPF website. It so clearly illustrates how devasting vp can be when it is not prenatally diagnosed. If this is OK with you, please send your story to info@vasaprevia.com along with your permission to publish it on the IVPF website. Include pictures if you like.

I'm so sorry! I'm glad you have found some peace through all this.

Cindy Paris
Mum to Nathan Elliot Paris ^i^
http://NathanParis.com
Secretary, International Vasa Previa Foundation
http://IVPF.org

Risk Factors, Testing, and IVPF Management Recommendations for Vasa Previa:
http://IVPF.org/education/recommendations.htm

Sign up to receive the free IVPF newsletter:
http://groups.yahoo.com/group/IVPF

To join the Vasa_Previa email discussion group, visit:
http://groups.yahoo.com/group/Vasa_Previa

Medical Resources on Vasa Previa
http://IVPF.org/resources/resources.htm

IVPF Slide Show about vasa previa
online - http://IVPF.org/Docs/IVPFslideshow.htm

IVPF Brochure
http://IVPF.org/Docs/IVPFbrochure.PDF

Frequently asked questions about vasa previa:
http://IVPF.org/faqs/faqs.htm

Sophie's Walk for Vasa Previa
http://SophiesWalk.org/walk

Help us research vasa previa by filling in the IVPF research questionnaire:
http://IVPF.org/education/questions.htm

Save babies from an untimely death due to vasa previa by JOINING the International Vasa Previa Foundation, Inc. as a participating member! Visit http://IVPF.org/contact/member.htm

---
Visit http://IVPF.org to learn about vasa previa. It only takes a moment to diagnose life...

 
At 11:47 AM , Blogger Marisa said...

Karen, you have touched my heart with this testament to your firstborn. With it, you continue to treat Andrew such dignity and love. How inspiring.

 
At 1:06 PM , Anonymous Anonymous said...

Yes, Andrew's story did bring tears to my eyes...and it is both tragic and beautiful. Thank you for sharing it and God bless Andrew and all of your family.

 
At 5:15 PM , Blogger Star said...

Happy Birthday Andrew.Your words are lovely Karen.

 
At 10:28 PM , Blogger Shane said...

Happy Birthday Andrew! He couldn't have asked for better parents.
Thanks for sharing your inspiring story.

 
At 1:30 AM , Blogger mar said...

Happy birthday to Andrew. Karen, I am one of those who really does not know what to say next, other that I am very moved by your story and all the love involved in it. I saw you at Michele's, I am glad I decided to drop by .

 
At 6:42 AM , Blogger caramaena said...

This story brought tears to my eyes. I can't imagine how difficult it must have been over the years. Happy birthday to Andrew.

 
At 1:27 PM , Blogger kenju said...

Thank you for sharing this most difficult story, Karen. Obviously, God had plans for Andrew. He seems to have taught you a lot, and as you have given him love and received it for yourselves (both from him and from others) you have all grown in patience and understanding. What a beautiful opportunity you had, and what a beautiful life you have made of it.

My best to Andrew and to his parents.

 
At 1:37 PM , Blogger Thumper said...

This is the 2nd time today that readong someone's blog has made me damn near choke on tears. Happy birthday to your son!

Michele sent me today, and I am so very glad she did.

 
At 3:53 PM , Blogger Bob-kat said...

That is a very touching story. you are very courageous people. I came here from Michele's but I am glad I got to read your story.

 
At 10:28 PM , Blogger Carmi said...

If I have a fraction of the strength and dignity as a parent that you have, my kids will be more than ready for whatever the world throws at them.

I write this through tears, but not of sadness. You've inspired me, through your courage in writing so unflinchingly about your life with Andrew, to continue to be a better spouse and parent in my own life.

You never cease to inspire me, Karen.

 
At 7:15 AM , Blogger Michele said...

Oh Karen, your "story" about Andrew does indeed elicit tears, and I am honoured to have shed them.

What a beautiful gift you have been given in the magic of your son and how many lives have been positively touched by him. What a beautiful gift you have given so many others by be willing to not only share his "story," but also, to share the heartache, wonder, joy, pain, beauty and love that is part of your story.

I admire you Karen for so many reasons. This post is just one of those reasons.

Happy Birthday Andrew!

p.s. thank-you Karen - you whelm me.

 
At 8:20 AM , Blogger Moogie said...

Thank you for sharing your story with us Karen. Andrew is most definitely a gift from God. Happy birthday Andrew.

 
At 11:17 AM , Blogger ma said...

You and your family are amazing and strong. I know......you would say "well, what choice did I have?" You know what, you did have a choice, you could have let such an experience break you or turn you into a bitter depressed person. You didn't. You are fun and funny and someone I love to hang out with. Our family is so lucky to know yours! Happy Birthday to Andrew!

MA

 
At 5:14 AM , Blogger Jean-Luc Picard said...

Karen, Andrew's story is told so well. He is lucky to have a strong supportive family around him that love him.

Wishing Andrew a Happy Birthday.

 
At 9:28 AM , Anonymous slackermommy said...

Happy Birthday Andrew! What a beautiful essay. I'm completely moved to tears. I couldn't agree with you more that God has a plan for each of us and there is always a grace that follows a difficult time. Knowing this is what gets me through hard times. I often write about this on my blog. Thank you for sharing your story.

 
At 1:11 AM , Blogger Swishy said...

Oh, Karen. I've sat here for five minutes and I don't know what to say, other than I am amazed at your strength.

 
At 12:55 AM , Blogger owlhaven said...

Oh, how tough...

Hugs

mary, mom to many

 

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