Parents asking for donations to pay for in vitro fertilization for 2nd child to be bone marrow donor

Parent Cafe
1

This story in CT today.
Family’s 3yo son has a genetic condition with only hope of real cure through a bone marrow donor and best chance from a sibling. So the parents are going public to help raise funds, in part to cover in vitro fertilization so that they can have a 2nd child who can be a bone marrow donor (mom is carrier, so they want to avoid a 2nd child with the gene mutation). My first thought was “wow”. My second thought was “you may not want to have made that part of your plan public” - Some of the funds will go to the sick child’s medical costs, etc.

Interested in people’s thoughts. Do you think it’s ethical/moral to “plan” a 2nd child for the (mostly?) purpose of providing a bone marrow donor for an older child? They may have been planning more children anyway, however the way the article is written, and clearly stating they need funds for the in vitro certainly gives the impression of this second child being part of the son’s medical care. I expect this family will hear from all sides…

http://www.courant.com/community/middletown/hc-middletown-nar-scaia-bone-marrow-0725-20150731-story.html

2

Read “My Sister’s Keeper” by Jodi Picoult. It’s told from the point of view of a sibling who was born specifically to save her sister’s life.

3

Yes, have read it…wondering if these parents have.

4

I can’t begin to imagine the torture of being those parents.

I don’t know what the answer is, but I can imagine grasping for any straw that would help my child.

People have asked for funding for so many things that are so incredibly selfish-- these poor parents are trying to do anything in their power to help their child.

5

I don’t have a problem with it as it is not my business. If people want to donate, fine. If people don’t want to donate, that is fine, too.

6

I would never judge a parent trying to save their child’s life.

7

It does seem like TMI, but on the other hand trying to raise money from other people for IVF would seem odd without these added details.

8

I think what they are doing is cruel. Bone marrow donation is very painful and here they are creating a life to then subject that life to this painful procedure - which may not even work (not all donations are successful). I personally can not support what they are attempting to do.

9

This very story happened about 20 years ago in southern California. The older daughter had leukemia and would have died. The father had a vasectomy reversal, the mom got pregnant and the sister was indeed a match for bone marrow. Last I read, the younger daughter is very much loved, the older daughter is still alive and has a family of her own. It all worked out very happily.

10

That’s a novel, i.e., fiction. The family that’s the subject of this thread is, presumably, real.

11

Here’s the happy true story of that southern California family 20 years later.

http://www.today.com/id/43265160/ns/today-today_news/t/born-save-sisters-life-shes-glad-i-am-family/#.Vb-OEvnHRl0

12

I think that this is absolutely the right thing to do, assuming that the new child will be loved and wanted. There’s no reason to think that this won’t be the case. The parents are obviously loving and devoted to their child, and they will feel the same way about the new sibling, whether or not the plan to save the older child’s life works. This family almost certainly planned on more children, anyway. They need the funding for IVF to ensure that the new child won’t have the genetic problem. They would have wanted to do that, anyway, even without the possibility of helping the older child.

I’ve known a few parents who have tragically lost a child. In every case, they had another child, even when they had previously completed their families. It seems to be a near-universal response to the death of a child.

13

When would the bone marrow be taken? I think there’s a pretty serious consent problem here.

14

Not IVF, but this was the very famous story of having one child to save another:

http://www.presstelegram.com/general-news/20130521/born-to-save-her-sisters-life-marissa-ayala-now-23-will-graduate-from-csulb

"Her family sparked a national conversation about medical ethics more than two decades ago when Marissa was conceived in hopes she would be a bone marrow match with her leukemia-stricken sister. "

15

I’m not sure, Hunt, but clearly it would be when the child was still very young. The consent issue is the only part of this that I find disturbing. But I think that it’s ethical for the parents to make this decision on behalf of a child who is too young to give consent. If there were an existing child who was a potential donor, and the only possible donor, would anyone question the parents’ decision to have that child donate marrow?

16

I’ve known a few parents who have tragically lost a child. In every case, they had another child, even when they had previously completed their families. It seems to be a near-universal response to the death of a child.

Yes, perhaps most famously Elizabeth and John Edwards who had two children via IVF after losing their son, Wade, in a car crash.

It’s not right to judge others in these situations. Nothing would replace the first child but additional children might help heal the hurt.

17

What’s the level of risk to a donor? I would at least ask that question.

18

While rare, obviously it has happened before and I don’t find it unethical or immoral. I find it alittle repugnant that they are asking for donations to cover the costs…but it’s their deal and I’m sure there are those that would willingly contribute. And yes, I agree with Tatin and have a friend who did just such a thing, went on to have 2 more kids after completing their family and then after losing one of the older children to cancer.

19

Often the cord blood can be used and there is actually nothing the ‘donor’ child does at all.

20

There are a million reasons why people decide to have a child, and many of them are bad ones. Very often, it’s an oops, whether or not someone is using birth control.

I cannot imagine a better reason than to save the life of their other child. So what if the child realizes what happened when they are older? Many of us know that we are around because our mom accidentally got pregnant, or some other silly reason. It’s all how the parents deal with it. And I think I’d be glad that I was able to help my sibling.