Thursday, January 31, 2013

Doctor insists parents choose starvation and slow death for baby born with cleft lip

I first heard about the Peterson family in what you might call a “chance meeting.” (Of course I don’t believe in chances; I believe that there is Someone who has a plan and a purpose behind the random occurrences in our lives.) And I firmly believe that this amazing family’s story needs to be told. It’s scary. It’s shocking. And its implications are dangerous. How many other hospitals starve babies to death, simply based on a “defect”? How many other doctors instruct new parents to leave their newborns to die or wallow in an institution for the rest of their lives?
We’re aware that many doctors in the United States recommend abortions for babies whose potential disabilities show up on ultrasounds or in prenatal testing. We’re also aware that, sadly, all too many parents choose abortion in these cases. And all too often, their babies are discovered to either be perfectly “normal” or the parents later on discover that the disability or defect was one they definitely could have lovingly dealt with, had they only been given accurate and complete information.
Our society has become consumer and product focused in an ultimately dangerous way. When we, the consumer, discover the news that our child, the product, is not quite up to par with our expectations, we are given the choice to end an innocent life. Perfection – though impossible to define – is the standard demanded. And who among us truly meets it?
The Peterson Family
Here are the Petersons – Quentin, Aidan, and Jodi – and here is their story:

1) What condition was Aidan born with?
Aidan was born with a bilateral cleft lip and palate. This affects about 1/700 children. We had no family history of this condition. All babies at some point in their early development have a cleft, but it spontaneously “knits” together (bringing to mind the Scripture, “You knit me together in my mother’s womb”), unless there is a genetic issue, if the mother is deficient in folate and from certain ethnic groups, or if the mother suffers certain viral illnesses at the time of gestation. In our case, Jodi had contracted the flu very early in pregnancy with a high fever.

2) When did you/the doctors discover his condition?
On October 7, 1997, our 8 pound, 14 ounce son Aidan was born at a hospital in Modesto, California. Immediately after he was fully delivered, we knew something was wrong. The doctors lowered him out of our sight instead of putting him on Jodi’s stomach and began whispering to each other. That’s when they told us he was born with a bilateral cleft lip and palate. It did not show up on an ultrasound. We were shocked.

3) What advice were you given?
The day after he was born, Aidan was taken into the NICU (Neonatal Intensive Care Unit) because he was unable to breastfeed, and was becoming dehydrated and weak. The hospital did not have the type of bottles babies with a cleft use to feed. The hospital pediatrician called my husband into the nursery and advised us to sign Aidan over to the hospital. He told us that we were still young, we could still have other children, and that these kids (kids with cleft lip and palate) tend to have neurological problems, he would require many surgeries that could bankrupt us, and that if we were foolish enough to ignore medical advice and take our baby home he would end right back at the hospital as a “failure to thrive.”
The “treatment plan” the doctor told us was that they’d give our son pain medicine, and let him die (of starvation and dehydration). Jodi began to cry and refused, at which point the doctor turned to Quentin and said, “Get her out of here, she’s being irrational.” He thought he would have a better chance at convincing Quentin to leave the baby.
He was wrong. Quentin also refused to sign the papers. We didn’t have a plan, and didn’t know where to find help, but we could not fathom abandoning our son to a certain death alone. It had to be the grace of God, to give us courage to choose life when the hospital authority was telling us otherwise. It was for both of us, the absolute scariest time in our lives.

4) What choice did you make and why?
We chose to fight for our son and love him, and we never regretted that decision.
We couldn’t believe they were giving Aidan this death sentence, but we would not abandon him. We could not imagine anything more heartbreaking than to have a helpless child left alone for the brief entirety of his life. Even if he had one day to live, he would spend that day being loved by us.
Then God’s providence stepped in. A nurse contacted a woman who herself was born with a cleft lip and palate who ran a local support group. She brought us the cleft palate nurser bottles. (These are supposed to be in every hospital, and all nursing and medical staff are to be trained to use them since it’s a fairly common birth defect.) This meant that our baby was finally able to eat. That hungry baby took his first bottle and rested in our arms. This was an unbelievable blessing. We did take him home, and he thrived. He has had eight surgeries to correct his lip and palate and associated difficulties like ear tubes, bone grafts, and scarring, and we’re anticipating a few more in the future.

5) Can you tell us about Aidan? What are his interests, what does he like to do with his free time?
Aidan is now 15 years old and in his freshman year of high school. He is a big brother to 13-year-old Devin (brother) and 10-year-old Kiera (sister). They’re homeschooled, and his studies include Latin, logic, literature, and math. Aidan’s a typical teenager and an avid reader, and his interests include animation, writing, history, the military, and aviation. He’s involved in his church’s teen group, and is a member or 4H. He loves going out and playing paintball with his buddies. His pets include a dog and eight chickens.

6) Looking back on the time before Aidan was born and the advice you were given and seeing him now as a 15-year-old, what advice would you give parents in a similar position?
Love your child with complete abandon, every moment that you are blessed to be with him. Love your child for who he is, and don’t let anyone scare you about future issues. No one knows what the future holds – not for us or for our children – but we know that love is eternal. Learn everything you can about whatever ails your child (the internet is a wealth of knowledge).
Fight for your child’s healthcare. No one will have their best interest at heart but the parents; God has given you the opportunity and responsibility to be their advocate. Every person on this earth has two things in common – we’re all made in the image of God, and none of us are perfect. We all have challenges, but do they diminish our ability to give and receive love? No. So don’t put too much faith in what doctors say – they can be wrong – but put your faith in God who is never wrong.

7) Does Aidan have any advice to give? What’s his perspective on this whole situation?
First off, I’d like to speak to everyone with a bilateral cleft lip and palate. You’re normal. The fact is that you’re just like everyone else, but you look somewhat different. I personally like to think it’s an improvement that God bestows on the lucky few and everyone else is just jealous (grinning here).
Looking back on my life, I’m very glad that my parents fought so hard for me, and disappointed that life seems to be so cheap in this generation – much like a passive waste to be disposed of if it doesn’t meet the irrationally perfect standards set forth by today’s murderous society.
What is my perspective on the situation? As I said, the world today disappoints me, and I pray it will soon end its ways. For any and all parents who are stuck in the same or similar situation that my parents were, listen up. Your kid is worth it, be he or she mentally or physically disabled. And as my mom said, if your kid only has one day to live, spend it loving your child. Put yourself in your kid’s shoes. You have one day to live, no two ways about it.
Which is better, to spend that day with your loving parents or starve to death while uncaring doctors simply pass you by, not caring at all for your plight? Answer that question and THEN make a decision on your kid’s life.

1 comment:

  1. "Don’t put too much faith in what doctors say – they can be wrong – but put your faith in God who is never wrong." AMEN!!!!! I agree whole heartily, If I would have listened only to the dr.s, I would have been devastated. You need to trust in God, who gave you the special child and become a strong advocate for them!

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