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

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 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 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:

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.

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.

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.

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.

It’s setting off my BS meter as well. I can believe some doctor (who’s not God but plays Him on TV) presented the option to basically starve their baby to death. However, that the couple received pressure to do so strikes me as untrue. Or else, the doctor had some serious emotional issues and would have many documented complaints against him. I don’t believe starving a baby with a cleft palate is best medical practice. I’d have reported some doctor to the hospital and the medical board who tried to tell me it was.

I will tell you that when my niece and her husband found out not only were they pregnant again, only a few months after their first daughter was born via cesarean after a difficult labor and pre-eclamsia, but this time with triplets, my niece’s then OBY (not the one who delivered their first child BTW) told her it was very risky, too risky in his opinion and that she should either abort or have a “selective” reduction, i.e. abort, i.e. kill/ murder two out of the three babies and that if she didn’t she was likely to die…he didn’t “pressure” them per se but advised them to do this and then admitted that neither his experience nor that of his hospital’s facilities were equipped to deal with this type of high risk delivery.

Of course this was very upsetting to my niece and her husband, but rather than panicking based on what he told them, they instead searched out and found an OBY specializing in high risk pregnancies at Penn State Hershey Medical Center (something their first doctor should have advised them to do IMO and was negligent for not doing so). This new OBY not only said that while there were very real risks, he was confident that if she was closely monitored and cared for, she had a very good chance of delivering all three and healthy and that their first doctor, who was at a small regional hospital without a NICU BTW, was probably too scared and possibly too incompetent to want to take on a case like hers. (This new doc BTW, was already semi-famous for delivering the sextuplets of another PA family who went on to have a TV show, and for him, triplets were a cake walk and nothing from what I understand compared to dealing with that diva mother who’s name rhymes with “Skate” - LOL). And my triplet great nieces are nearly 5 years old and their “big” sister nearly 6 and although they are wearing out their parents, mentally, physically and financially, all are healthy and thriving :) and my niece and her husband wouldn’t nor I would want it any differently.

It should also be important to note that my niece had to be hospitalized in the high risk maternity ward a full month before the scheduled c-section at 32 weeks and my great nieces spent nearly a month in the NICU before coming home but more importantly, they all received excellent care. And the delivery was a carefully planned and coordinated event with a team of NICU nurses assigned for each of the three babies and more than one doctor attending. The triplets were rather good sized for being multiples and at 32 weeks but spent their first weeks in incubators and on nasal feeding tubes and the littlest one had a lot of breathing problems and a heart valve closure problem that thankfully was treated with medication. But the care they all received was beyond excellent and I fear that sensational stories like this make some distrust not only the very few bad eggs in the medical profession but also discourage people from getting good medical care out of often unfounded fears that all doctors and all hospitals want to kill them which more often than not is simply not the case.

So with all that being said and knowing there are some “bad” doctors out there, I’m also having more than a bit of a hard time believing the story as written.

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.

First of all it is or at least should be SOP to take a baby with a problem as severe as bilateral cleft lip and palate to the NICU right away, not a day later. Secondly I find it rather hard to believe that a hospital large enough to have a NICU wouldn’t have on hand or be able to quickly obtain the specialized feeding bottles or were completely unprepared to deal with bilateral cleft lip and palate since it effects 1/700 children. And lastly I find it very difficult to believe that any parents could, even if they wanted to or a doctor wanted them to, simply “sign over” their child to the hospital for any reason. For one thing, surrendering parental rights is not something that can typically be done by a single stroke of a pen; there are many legalities involved. For another thing, I’ve never heard of a hospital taking “full parental custody” of any baby, even of abandoned children. In those cases of abandonment or in cases of severe abuse or neglect, CPS and the courts get involved, the abandoned child is appointed by the court an advocate and temporary foster parents. Hospitals simply do not have parents sign their children over to the hospital voluntarily or involuntarily.

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.”

That’s another thing that doesn’t ring quite true. First of all, kids with cleft lip and palate do not “tend to have neurological problems” and even if that was a real possibility, some very simple tests could be performed to either confirm or rule that out shortly after birth.

Next it doesn’t make sense that a pediatrician would on one hand recommend “starvation” but on the other hand express concerns that if they took their baby home that he would be brought back as a “failure to thrive.” It seems perhaps more likely that the doctor advised the parents not to take their baby home right away and against medical advice to keep him in the NICU until he gained weight.

Next it would be very highly unusual for any doctor to express concerns about financial considerations or “possible” future bankruptcy over patient care. And interestingly the article says nothing about this couple’s insurance or financial situation at the time their son was born. Going back to my niece and her husband, they both had excellent insurance with their employers and it paid for a good deal of their triplets’ delivery but it still left them with a considerable amount of uncovered hospital expenses and debt. Some were written off (their OBY, a good doc and a good person for instance simply wrote off his bill) but 4 years later, they did file for bankruptcy but not only because of uncovered hospital bills - two student loans also contributed to that decision but the possibility of them not being able to pay all their doctor’s and hospital bills simply never factored in to the care my niece or my great nieces received at Penn State Hershey Medical Center. In fact the hospital through their patient advocacy and social work department and the NICU support staff, put my niece in touch with several NFP orgs that are involved in helping families with multiple births and premie births - she received a lot of help and support from these orgs and from other multiple moms with whom she was put in touch with both in moral support but also financial help, and that included many discounts and coupons from many retailers who give unadvertised discounts to multiple birth moms including Macy’s, Target and Babies R Us and diaper and formula companies. And she also has nothing but good things to say about the Ronald McDonald house where she stayed for a time while the triples were still in the NICU.

And finally and perhaps the most important inconstancy in the Life Site story as published is that a single doctor would not only not have the authority to have the hospital he worked for take custody of a baby by having the parents sign a piece of paper surrendering their custody to the hospital, but that even in cases of withholding extreme measures and only providing palliative care in cases where there is no absolutely no hope for the infant’s survival; and here I’m talking about very extreme cases like Anencephaly, that decision is never (at least in any hospital I know of) left to the sole discretion of one single doctor.

This story, while compelling and on the surface makes for a compelling pro-life story, simply doesn’t pass my BS meter either. Life Site News while on the “right” side on the pro-life cause, often publishes sensational stories absent any fact checking or vetting and even worse, all too often publishes outright false or incomplete information, it often inadvertently only serves ultimately to hurt and damage the pro-life cause.

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