Friends' Dying Baby

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steve975

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A friend of the family who frequently speaks to my mother recently had a premature baby, which up until his birth seemed healthy. The baby has a serious condition called CHARGE syndrome, which causes all kinds of unfortunate developmental problems, both physical and mental. The baby has not been doing well at all, parts of his brain have periodically “died”, and the prognosis is not good. He’s currently hooked up to a respirator and can’t fully breath on his own. Doctors expect that the baby may very well die, and if he does make it, he will most likely be severely mentally impaired, physically handicapped, and he might already be blind. They have given this girl and her husband the option of unhooking the respirator from the baby, after which he would most likely die over several hours. Otherwise, they will perform several serious operations to correct some of his problems, and he could die during the procedures. They are in a terrible situation where every choice seems unbearable.

A priest just told this girl that if she wanted to unhook the respirator now, she would be perfectly morally justified in doing so. As far as I’m aware, this is entirely false given the current situation and the priest is ill-informed. I don’t think the girl wants to do this. Even so, there is that and another problem in that the girl is so distraught and beside herself that she says she can’t even think. She is unable to get her mind at ease enough to be able to think things through, consider options, and consider right from wrong.

Is there a good source on this matter that I could have my mother refer her to who can be trusted in matters of Catholic doctrine on these kinds of issues and who can help comfort people and walk them through these things when they otherwise are completely mentally overwhelmed?

On a side note, I have just about had it with ill-advised priests. There have been so many occasions in which a priest has advised me or someone I know in violation of Church Doctrine. The Church is infested with perhaps more ill-advised priests than priests who can be trusted. Not only do I now distrust priests until they prove they are reliable, but this also makes it excruciatingly difficult to bring others into the Church or help pseudo, “lukewarm” Catholics see the light.
 
😦

No advice, but I’m praying for that baby and the whole family.
 
Just because the baby may have serious health problems if he pulls through is not sufficient reason to discontinue treatment. My understanding is that you are allowed to take a loved one off of a respirator if they are already brain dead or something like that. You are not allowed to take a loved one off a respirator because you want to avoid a life with complications for your child.

I hope someone will be able to post more info for you to give this friend. I will be praying for the baby and his parents…that they make the loving decision and fight for his life.

You may want to contact:

ncbcenter.org/emergency_consultation.asp
 
I can’t even remotely imagine the pain that these parents are going through. I’m sure that they are just broken hearted – having to make such serious decisions when they haven’t even had the opportunity to digest all that they’ve been going through.

I honestly don’t know what I would do in the same situation. However, I wouldn’t assume the priest is ill-advised. If a person/child is unable to breathe on their own without machine intervention, then I don’t think it’s necessarily wrong to remove them from life support and let nature take its course. However, if they choose to continue with any medical treatment that they can try, I would have no issue with that as well. Maybe the priest was just trying to give comfort. According to the OP, the priest said “If she WANTED to remove the life support, she would be morally justified in doing so.” I don’t see that as the priest telling her she has to.

Just my opinion.
 
I will keep them in my prayers and I would think that the Priest that they asked would know better than I. Bit. I would always opt for life however, afterall, if the only hope the baby has is the operations, why not go for it? (I’ll do some checking around different sites and see if I can’t come up with something while I pray for them all.)
 
How heartbreaking. Prayers for the baby and parents.

I apologize ahead of time if what I am about to say sounds cold.

The general life “rule” that the Church teaches is that we do not need to use “extraordinary” means to preserve life and delay death. The ordinary means for life need to be provided. The problem is determining the difference.

Because medicine is always making new discoveries and finding new treatments, yesterday’s extraordinary may become tomorrow’s ordinary. Also, what is “ordinary” in a developed part of the world may be completely unavailable in a less developed area and thus “extraordinary”. In some cases a treatment might be considered ordinary if it is a temporary measure while the body heals/grows but would be extraordinary if it will be necessary for the remaining lifespan of the person. And while it seems almost callous to say so, the expense of a treatment can also be a factor in deciding whether or not something is ordinary or extraordinary.

As far as I understand long-term use of a respirator generally falls under the heading of “extraordinary”. Tubes for food and water are generally considered “ordinary”.

I don’t really know anything about this baby’s condition. The case of this baby might fall into a gray area if the doctors really can’t predict whether or not treating this baby will have any long term benefit for the overall health of the baby.
 
Steve975
right away I found this:
chargesyndrome.org/
they actually have a web site, lots of reading though, perhaps it will help you.
Maybe you could call this site Catholic Answers and ask if they know or have any info on this.
Mainly says they need early intervention and can grow into quite happy and healthy people.🙂
Under other resources it said this:
Other Online CHARGE Resources
The links listed below are to help you in your search for more information regarding CHARGE syndrome. Please note that we do not control any of the information you may find on these sites.
chargesyndrome.org/resources.asp
It had about 20 other resources listed.
Here is a pdf file on it. (mainly addressed to the parents)
chargesyndrome.org/New%20Parent%20Packet/faq.pdf
 
More info:
source:rarediseases.about.com/od/rarediseasesc/a/chargesyndrome.htm
CHARGE syndrome occurs in approximately 1 in 10,000 births worldwide, and** usually the infant is the only child in the family with the syndrome. **
Symptoms
Each of the physical features of CHARGE syndrome ranges from near normal to severe, so each child born with the syndrome may have different physical problems. Some of the most common features or birth defects are:
Coloboma of the eye (80-90 percent of individuals) - a fissure (crack) usually in the back of the eye. One or both eyes may also be too small (microphthalmos) or missing (anophthalmos).
Choanal atresia (35-65 percent) - The back of the nasal sinuses on one or both sides is narrowed (stenosis) or doesn’t connect with the back of the throat (atresia).
Cranial nerve abnormality – **Missing or decreased sense of smell **(90-100 percent), difficulty swallowing (70-90 percent), **facial paralysis **(palsy) on one or both sides (50-90 percent).
Heart defect (75 percent) - Different types of heart defects may occur. The **most frequent type is a hole in the heart **(septal defect).
Growth retardation (80 percent) - This is first detected when the infant fails to grow normally in the first six months of life. It is due to growth hormone deficiency and/or feeding difficulty. The child’s growth tends to catch up after infancy.
Mental retardation (70 percent) – **IQ may range from normal to severe retardation. **Underdeveloped genitals (male 80-90 percent, female 15-25 percent)
Ear abnormalities (95-100 percent) - The ear on the outside is malformed. Problems in the inner ear, such as abnormal semicircular canals or nerve defects, **may result in deafness **(60-90 percent).
Someone I read somewhere in all of this said that Doctors sometimes give the most hopeless of diagnois but that it isn’t hopeless.
I’ll keep praying, hope this helped.
 
The National Catholic Bioethics Center may be able to provide advice ncbcenter.org/

I would strongly suggest the parents contact the support groups that were listed for this condition in the above post. Doctors do have a tendancy to “hang black crepe” or make things look far more dismal than they are.

You can access the USCCB documents on end of life issues here usccb.org/prolife/tdocs/index.shtml#E
 
No advice, since others have posted very good links… just a prayer.

Dearest Blessed Mother, wrap your loving mantle around this family and present them to your Divine Son.

Please obtain from Him for these parents peace and consolation so that any decision they may make will be in accord with His Will, and if it is His Will, healing for the baby.

Hail Mary, full of grace, the Lord is with thee. Blessed art thou amongst women and blessed is the fruit of thy womb, Jesus. Holy Mary, mother of God, pray for us sinners, now and at the hour of death. Amen.
 
Dear OP,

Prayers for this family during this heart-breaking time!

Please give them the following address:

www.prenatalpartnersforlife.com

This is a 100% prolife, faithfully Catholic group who gives support to people who receive an adverse diagnosis for their little one, either unborn or newborn. They link up new parents with other parents who received a similar diagnosis for their child in the past, so they can offer support, advice, and the wisdom of someone who has been there themselves. They also have experts in bioethics, Catholic teaching, medicine, etc that can be consulted.

Please encourage this couple to reach out to this group for support! I have first hand experience of how heartbreaking this type of situation is. Prenatal Partners for Life is a wonderfully helpful group!
 
The video on the CHARGE website was wonderful. Hearing the parents talk about how scary the early months were-- there’s no road map for that-- just trust in God and living an hour at a time.

Aren’t these children so absolutely beautiful? What precious little beautiful children.

Many prayers for your family friends and their new baby.
 
my heart aches for this family, they are in my prayers. I wish I had some advice other than the advice from our parish priest and that is to pray to the Blessed Mother for guidance. She will give direction to those who seek it.
 
My prayers are with the family.

As for what the priest told the family, he was, indeed, correct. The Church teaches that we are not required to use extraordinary measures, which includes a respirator, endure painful surgery or exhaust all possible medical treatments. Only reasonable medical and food and hydration. The parents are not morally obligated to continue to use of the respirator unless there is a reasonable expectation that it is temporary.

Personally, I can hardly imagine a more painful decision. But then, I had to make the very same decision regarding my father last October, so I have a least a small idea of what is involved.
 
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