Kristi Burton Brown

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

Kristi Burton Brown
By Kristi Burton Brown
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January 31, 2013 (LiveActionNews.org) - 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 abortionin 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 beengiven 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?

Here are the Petersons – Quentin, Adian, and Jodi – and here is their story:

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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.

Reprinted with permission from LiveActionNews.org.

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Newsbusters Staff

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Disney ABC embraces X-rated anti-Christian bigot Dan Savage in new prime time show

Newsbusters Staff
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March 30, 2015 (NewsBusters.org) -- Media Research Center (MRC) and Family Research Council (FRC) are launching a joint national campaign to educate the public about a Disney ABC sitcom pilot based on the life of bigoted activist Dan Savage. MRC and FRC contacted Ben Sherwood, president of Disney/ABC Television Group, more than two weeks ago urging him to put a stop to this atrocity but received no response. [Read the full letter]

A perusal of Dan Savage’s work reveals a career built on advocating violence — even murder — and spewing hatred against people of faith. Savage has spared no one with whom he disagrees from his vitriolic hate speech. Despite his extremism, vulgarity, and unabashed encouragement of dangerous sexual practices, Disney ABC is moving forward with this show, disgustingly titled “Family of the Year.”

Media Research Center President Brent Bozell reacts:

“Disney ABC’s decision to effectively advance Dan Savage’s calls for violence against conservatives and his extremist attacks against people of faith, particularly evangelicals and Catholics, is appalling and outrageous. If hate speech were a crime, this man would be charged with a felony. Disney ABC giving Dan Savage a platform for his anti-religious bigotry is mind-boggling and their silence is deafening.

“By creating a pilot based on the life of this hatemonger and bringing him on as a producer, Disney ABC is sending a signal that they endorse Dan Savage’s wish that a man be murdered. He has stated, ‘Carl Romanelli should be dragged behind a pickup truck until there’s nothing left but the rope.’ ABC knows this. We told them explicitly.

“If the production of ‘Family of the Year’ is allowed to continue, not just Christians but all people of goodwill can only surmise that the company Walt Disney created is endorsing violence.”

Family Research Council President Tony Perkins reacts:

“Does ABC really want to produce a pilot show based on a vile bully like Dan Savage?  Do Dan Savage’s over-the top-obscenity, intimidation of teenagers and even violent rhetoric reflect the values of Disney?  Partnering with Dan Savage and endorsing his x-rated message will be abandoning the wholesome values that have attracted millions of families to Walt Disney.”

Dan Savage has made numerous comments about conservatives, evangelicals, and Catholics that offend basic standards of decency. They include:

  • Proclaiming that he sometimes thinks about “f****ing the shit out of” Senator Rick Santorum

  • Calling for Christians at a high school conference to “ignore the bull**** in the Bible”

  • Saying that “the only thing that stands between my d*** and Brad Pitt’s mouth is a piece of paper” when expressing his feelings on Pope Benedict’s opposition to gay marriage

  • Promoting marital infidelity

  • Saying “Carl Romanelli should be dragged behind a pickup truck until there’s nothing left but the rope.”

  • Telling Bill Maher that he wished Republicans “were all f***ing dead”

  • Telling Dr. Ben Carson to “suck my d***. Name the time and place and I’ll bring my d*** and a camera crew and you can s*** me off and win the argument.”

Reprinted with permission from Newsbusters

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Jacqueline Harvey

Ending the end-of-life impasse: Texas is poised to ban doctor-imposed death by starvation

Jacqueline Harvey
By Jacqueline Harvey

AUSTIN, Texas, March 30, 2015 (TexasInsider.org)  After five consecutive sessions of bitter battles over end-of-life bills, the Texas Legislature is finally poised to pass the first reform to the Texas Advance Directives Act (TADA) in 12 years. An issue that created uncanny adversaries out of natural allies, and equally odd bedfellows, has finally found common ground in H.B. 3074 by State Rep. Drew Springer.  

H.B. 3074 simply prohibits doctor-imposed euthanasia by starvation and dehydration.

Since H.B. 3074 includes only those provisions and language that all major organizations are on record as having deemed acceptable in previous legislative sessions, there is finally hope of ending the end-of-life impasse in the Texas Capitol.

Many would be surprised to learn that Texas law allows physicians to forcibly remove a feeding tube against the will of the patient and their family. In fact, there is a greater legal penalty for failing to feed or water an animal than for a hospital to deny a human being food and water through a tube.

This is because there is no penalty whatsoever for a healthcare provider who wishes to deny artificially-administered nutrition and hydration (AANH). According to Texas Health and Safety Code, “every living dumb creature” is legally entitled access to suitable food and water.

Denying an animal food and water, like in this January case in San Antonio, is punishable by civil fines up to $10,000 and criminal penalties up to two years in jail per offense. Yet Texas law allows health care providers to forcibly deny food and water from human beings – what they would not be able to legally do to their housecat. And healthcare providers are immune from civil and criminal penalties for denial of food and water to human beings as long as they follow the current statutory process which is sorely lacking in safeguards.

Therefore, while it is surprising that Texas has the only state law that explicitly mentions food and water delivered artificially for the purpose of completely permitting its forced denial (the other six states mention AANH explicitly for the opposite purpose, to limit or prohibit its refusal), it is not at all surprising that the issue of protecting a patient’s right to food and water is perhaps the one point of consensus across all major stakeholders.

H.B. 3074 is the first TADA reform bill to include only this provision that is agreed upon across all major players in previous legislative sessions.

There are irreconcilable ideological differences between two major right-to-life organizations that should supposedly be like-minded: Texas Alliance for Life and Texas Right to Life. Each faction (along with their respective allies) have previously sponsored broad and ambitious bills to either preserve but reform the current law (Texas Alliance for Life’s position) or overturn it altogether as Texas Right to Life aims to do.

Prior to H.B. 3074, bills filed by major advocacy organizations have often included AANH, but also a host of other provisions that were so contentious and unacceptable to other organizations that each bill ultimately died, and this mutually-agreed-upon and vital reform always died along with it.

2011 & 2013 Legislative Sessions present prime example

This 2011 media report shows the clear consensus on need for legislation to simply address the need to protect patients’ rights to food and water:

“Hughes [bill sponsor for Texas Right to Life] has widespread support for one of his bill’s goals: making food and water a necessary part of treatment and not something that can be discontinued, unless providing it would harm the patient.”

Nonetheless, in 2013, both organizations and their allies filed complicated, contentious opposing bills, both of which would have protected a patient’s right to food and water but each bill also included provisions the rival group saw as contrary to their goals. Both bills were ultimately defeated and neither group was able to achieve protections for patients at risk of forced starvation and dehydration – a mutual goal that could have been met through a third, narrow bill like H.B. 3074.

H.B. 3074 finally focuses on what unites the organizations involved rather than what divides them, since these differences have resulted in a 12 year standoff with no progress whatsoever.

H.B. 3074 is progress that is pre-negotiated and pre-approved.

It is not a fertile springboard for negotiations on an area of mutual agreement. Rather it is the culmination of years of previous negotiations on bills that all came too late, either due to the complexnature of rival bills, the controversy involved, or even both.

On the contrary, H.B. 3074 is not just simply an area of agreement; moreover, it is has already been negotiated. It should not be stymied by disagreements on language, since Texas Alliance for Life and Texas Right to Life (along with their allies) were able to agree on language in 2007 with C.S.S.B. 439. C.S.S.B. 439 reads that, unlike the status quo that places no legal conditions on when food and water may be withdrawn, it would be permitted for those in a terminal condition if,

“reasonable medical evidence indicates the provision of artificial nutrition and hydration may hasten the patient’s death or seriously exacerbate other major medical problems and the risk of serious medical pain or discomfort that cannot be alleviated based on reasonable medical judgment outweighs the benefit of continued artificial nutrition and hydration.”

This language is strikingly similar to H.B. 3074 which states, “except that artificially administered nutrition and hydration must be provided unless, based on reasonable medical judgment, providingartificially administered nutrition and hydration would:

  1. Hasten the patient’s death;
  2. Seriously exacerbate other major medical problems not outweighed by the benefit of the provision of the treatment;
  3. Result in substantial irremediable physical pain, suffering, or discomfort not outweighed by the benefit of the provision of the treatment;
  4. Be medically ineffective; or
  5. Be contrary to the patient’s clearly stated desire not to receive artificially administered nutrition or hydration.”

With minimal exceptions (the explicit mention of the word terminal, the issue of medical effectiveness and the patient’s right to refuse), the language is virtually identical, and in 2007 Texas Right to Life affirmed this language as clarifying that “ANH can only be withdrawn if the risk of providing ANH is greater than the benefit of continuing it.”

Texas Right to Life would support the language in H.B. 3074 that already has Texas Alliance for Life’s endorsement. Any reconciliation on the minor differences in language would therefore be minimal and could be made by either side, but ultimately, both sides and their allies would gain a huge victory – the first victory in 12 years on this vital issue.

It seems that the Texas Advance Directive Act, even among its sympathizers, has something for everyone to oppose.

The passage of H.B. 3074 and the legal restoration of rights to feeding tubes for Texas patients will not begin to satisfy critics of the Texas Advance Directives Act who desire much greater changes to the law and will assuredly continue to pursue them. H.B. 3074 in no way marks the end for healthcare reform, but perhaps a shift from the belief that anything short of sweeping changes is an endorsement of the status quo.

Rather, we can look at H.B. 3074 as breaking a barrier and indicating larger changes are possible.

And if nothing else, by passing H.B. 3074 introduced by State Rep. Drew Springer, we afford human beings in Texas the same legal access to food and water that we give to our horses. What is cruel to do to an animal remains legal to do to humans in Texas if organizations continue to insist on the whole of their agenda rather than agreeing to smaller bills like H.B. 3074.

The question is, can twelve years of bad blood and bickering be set aside for even this most noble of causes?

Reprinted from TexasInsider.org with the author's permission. 

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But though we have made great strides in the past few days, we still need many more donations if we are going to have any hope of making it all the way by April 1st.

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