[LukeK]

Hello! I am the birth father of a beautiful 3mo little girl who has been diagnosed with spina bifida and a dysplastic brain stem and cerebellum. When we first learned about this condition in April, we considered termination but after reviewing the ultrasound report, there was a poorly defined spinal sac and good leg movement so we really couldn't bring ourselves to do it.

Our little daughter was born in early September, and was very lucky. She had an L2 lesion but a fantastic neurosurgeon, so she retains full movement in her legs, feet and toes. Her bowels and bladder are working pretty well and no catheterization is necessary yet. This is much better than we expected.

Unfortunately, her brain stem issues put her in that 1% of kids with spina bifida that have issues breathing and eating. She is on a ventilator (she can breathe on her own 98% of the time, but it's that last 2% that is scary) and has a tracheostomy because her vocal chords are mostly paralyzed. She has a G-tube for feeding.

My wife and I are unable to deal with the ventilator issues. The necessity for mechanical intervention dramatically shifts the amount of time needed for care. We agreed to go forward with the spina bifida and the trach surgery, but the vent is a step too far. We do not believe we can handle it, and are deathly afraid of the strain destroying our marriage and our older daughter after 3-4 years (if not less) and forcing us into an adoption situation later, where it would affect both our daughters more. No one person in a family can be the constant center of the universe; we believe this would be our daughter's health - and this would be detrimental to all of our health as a family.

We therefore are looking for our daughter to be adopted into a loving, caring family that could devote to her the time, energy and love she deserves. We are unsure where to begin. We do NOT want her to go into the custody of the state, and wish to retain custody until she goes to her new family. Do agencies handle this? Who are the reputable ones? Is this governed by state law? How does Georgia handle it?

The other thing we are interested in is an "open" adoption. My understanding is that this is a process where the records are not sealed, and at some point our daughter may be able to look us up if she chooses to. Is this feasible? Our preference would not be involvement during her childhood, only to give her the choice upon adulthood to learn about what happened.

Tip, suggestions and assistance are most gratefully appreciated.

[rindava]

and there is a site on NATTHAN I think that is a special needs homeschooling site that have a list of people awaiting special medical needs adoption

I wish I could help out, but every lead I've had on this forum has turned out to be basically false (I DON"T MEAN TO SAY YOU ARE, I JUST MEAN TO POINT THAT OUT TO OTHERS) Also, there is a site on this adoption forum board to post waiting special needs children.

Bethany Christian is just about all over the country and I've found them to be really helpful to most all people wanting to place a child. If you are Catholic or Jewish they also have strong adoption programs nation wide.

You may also want to check out some of the waiting parent sites that advertise parents waiting to adopt as some are very interested in adopting special needs children.

Also, you may want to check out your local community services board or United Methodist or Lutheran Family Services....I'd call up a few agency in your area. They should offer you free counseling sessions about this and placeing a child should not cost you a thing, also many offer foster care while you really explore your options.

[rindava]

the site was moved to www.CHASK.org Christian Homes and Special Kids. Most of the families posted are big, but they have others not on the list.

I think you did right by giving the child life!!

My thoughts are with you

[rindava]

I don't know anything about them, but they were listed as a resource on one site www.acresofhope.com

[Sharon]

LukeK,
Have you considered institutional care for your daughter, as an alternative to adoption? It sounds like, due to the extent of her problems, she really needs around-the-clock care by trained specialists. I can understand the strain that having a child in the home on a ventilator might place on other family members, especially if the conditions are chronic and are not reversable.
If you are unable to find adoptive parents willing to take on this responsibility, perhaps you might look into placing your daughter into a live-in facility that specialized in treating children with problems like these; that way you could still remain in her life, visit her often, bring her home on weekends, etc. Or what about in-home care or respite nursing care for at least part of each day? You should ask your child's doctors about possible programs like this; if expense is an issue, there may be state programs designed to cover part if not all of the cost.
I am not trying to dissuade you from adoption; I am only suggesting other alternatives you might look into as well.
I am the oldest sister of three; both of my siblings are severely handicapped. I love them both, I wouldn't trade them for the world... but growing up, my needs were more or less continuously pushed into the background out of deference to their far greater needs. Be sure and give your elder daughter an extra hug today... and every day.
Best wishes to you, whatever you decide. ~Sharon

[DianeS]

I am sorry to hear that you find yourself in such a difficult decison. But I am VERY glad to see that you are giving this the research it deserves, and not rushing into anything.

There probably are people out there who would be willing to adopt your daughter and care for her correctly. The trouble is finding them.

There are several ways of going about searching for that family. You can search yourself, enlist the help of a few individuals, or enlist the help of a regional or national network. In most cases (but not all), private adoption attorneys have fewer contacts than larger agencies. Agencies like Bethany Christian Services, Lutheran Family Services, and others, have offices in most major towns throughout the USA, and by the strength of those numbers have access to a larger number of potential adoptive parents than smaller agencies or ones whose sphere of influence is smaller.

It wouldn't hurt for you to call an agency like that up, and describe your situation. I'm sure they have people who can talk to you, to describe the services they offer, the number of special-needs children they've placed in the last year, and the like. Don't sign anything until you've attended numerous sessions like that, from several different agencies and private attorneys! Right now, you just need to know what the options are, and the people who'd handle the matching and legalities are the ones who can tell you.

The time it will take to find a family who has the resources to care for your daughter cannot be predicted. A certain agency may have families who wish to adopt a child like yours already available, but there's no guarantee you'll like them or that they'll fall in love with this particular child. Again, don't be pressured into signing anything until you've talked to quite a few lawyers/agencies.

If you're determined to keep custody of her until she is adopted by the peopel you choose, be sure to check out the legalities of what will happen if the adoptive parents you chose change their minds after you have signed papers ending your parental rights to your daughter. Other questions will occur to you as you go, I'm sure.


You also mentioned an "open adoption"... but the description you gave isn't what is usually meant by that. An "open adoption", by common definition, is one where the biological parents and the adoptive parents exchange some sort of information and agree to some sort of ongoing contact throughout the child's growing-up years. This can vary from meeting once, exchanging first names, and agreeing to one exchange of photographs of child and parents through an intermediary, all the way to meeting often, exchanging full names and addresses and phone numbers, and agreeing to constant letters, pictures, and visits. Or anything in between.

It's important to know that in ALL adoptions, the adoption records and original birth certificate are sealed. There is no way of obtaining them without a court order (rare), or meeting one's biological parents and getting the pre-adoption records from them.

Open adoption is rarely enforcable by law. The adoptive parents can agree to most anything, and in 45 states or more they can walk away and never reveal anything to the child and never contact you again, and not be held liable in any way. There is no way to guarantee your child will have the information necessary to locate you in the future. You have to go with your instincts, more or less, about how the adoptive parents you choose will act in years to come.

I don't want to scare you off of the idea of adoption, I just also don't want you to go into it thinking it will be a certain way because that's what the agreement was. Do your research, be sure to find out what's enforcable by law and what isn't, what's common and expected and what isn't, and so on.

I hope you find what you're looking for, and that it all works out for your daugher.

[ChrisE]

My husband and I adopted two boys, both of whom had the same type of sb as your daughter. We brought one home at 2mo. and the other at 6mo., just in time for them to have the required surgeries. They are nine days apart and came to us within three months of eachother(we totally weren't expecting to adopt so close together, but couldn't say no!). They are now 22mo. of age and doing wonderfully(full bladder and bowel control, running everywhere!). We were told they wouldn't walk until they were three years of age-they walked at 16 and 19mo. of age. Our boys did not have respiratory concerns, but one came to us with several other problems, all of which are now corrected. They have done better than imaginable. They are thriving. We are so grateful for them!!!
We began praying for another sb baby back in the spring. We found a baby girl in Latin America with sb, but the birthmother decided to parent. We recently adopted a little girl with cp and micro.
I know there has to be other people who are probably looking for a special needs baby. That being said, I also want to encourage you to think about giving yourself a little more time before you decide to place your child. You stated she had the sugery already, at three months she must have just had it! This can be a very emotional, stressful time! Six months down the road it may not seem so overwhelming! It will get easier!! You clearly love your child and want what is best for her. What does your wife think about all this?
I cannot imagine the position you are in! We are very close to both of our boys birthmothers and love them dearly. I know how hard it was for them. Please know that we will keep you in our prayers. If we can be of any encouragement or support, please let us know!

May God bless and strengthen you and your family!
ChrisE
herbdoc1@hotmail.com

[LukeK]

Originally posted by rindava
I wish I could help out, but every lead I've had on this forum has turned out to be basically false (I DON"T MEAN TO SAY YOU ARE, I JUST MEAN TO POINT THAT OUT TO OTHERS) Also, there is a site on this adoption forum board to post waiting special needs children.

First, let me say thank you. You've gotten us started in the right direction and given us some places to look. That has gotten us a lot farther along in just 24 hours, and we are very grateful. To be candid, as a parent I would feel very wary of giving my child to someone who answered a post on an Internet discussion forum (this from someone who's used the internet since the early 1990s and knows it can be a lot more than a meeting place for perverts and weirdos!). I can assure you that our search is genuine, but the place of our meeting may preclude anything further.

My wife and I have started looking through the sites that have been suggested to get a feel for things. Her gut impression on Bethany was that there didn't seem to be a great emphasis on special needs children, but this is merely a first impression. They seem established and with a good presence, which makes us feel confident. I got a good vibe from the CHASK site. We are looking at homeschooling our older daughter (though not for religious reasons) so are somewhat familiar with the homeschooling scene.

Thank you again for your help and suggestions.

[LukeK]

Originally posted by Sharon
If you are unable to find adoptive parents willing to take on this responsibility, perhaps you might look into placing your daughter into a live-in facility that specialized in treating children with problems like these; that way you could still remain in her life, visit her often, bring her home on weekends, etc. Or what about in-home care or respite nursing care for at least part of each day?

Thank you for your suggestions. They are greatly appreciated.

This is something we have considered as a fallback position should a placement not happen. However, we do not consider it ideal. A few years ago I worked for an individual who was commissioned by the Ontario government to write a report on early childhood education. While I didn't agree with his recommendations (a large government education bureaucracy for small children) I do wholeheartedly agree that the level of stimulation and involvement a child receives in the first 3 years of life can be critical to her future development. (This is of course not to say that our futures are all determined by our third birthday; only that with the right support and love and care everything going forward can be made easier or more difficult.)

I don't want our little girl to be in an institution, because she will not get the stimulation she needs and deserves. I guess we are scared because we have seen the NICU where Heather has been for 3 months, and while the nurses and doctors and RTs are sweet and caring, it's not a stimulative and nurturing place for a little baby. Ultimately, what kind of care can she get in a facility by people who aren't her parents or family?

I guess in some way we're projecting our wishes for Heather. We want her to have loving caring parents who know going into this what is expected. We were under no illusions, but setback after setback has slowly but surely beaten us all down - my wife, my daughter and myself. (I'll be honest - had we known at Easter what know now our decision on termination would have been probably different, but we need to move forward with what is best for our little girl.) I think she needs love and involvement and effort and energy, and on an intellectual level I believe that she needs a complete bond with those good folks who are willing to provide this.

I think our little girl has a good chance of being a wonderful child with less serious health issues in the future. Whoever takes her deserves that joy and happiness should she get better, and she deserves to stay with whoever has given her that part of their life to get her to that point. We just can't get her there, and I'm convinced that the consequences to her of institutional care in these early years would be too high.

[LukeK]

Originally posted by DianeS
Don't sign anything until you've attended numerous sessions like that, from several different agencies and private attorneys! Right now, you just need to know what the options are, and the people who'd handle the matching and legalities are the ones who can tell you.

Thank you for your suggestion. This is indeed our plan - we are looking through a number of places with an emphasis on special needs adoptions to build a shortlist of organizations to contact. Once we are there we can narrow it down. Additionally, we are looking to hire an attorney to assist us in reviewing things.

My understanding (which is poor) of these matters is that the adoptive parents typically retain an attorney that does much of the legwork, so any role for our attorney would simply be to review the paperwork before signing so that we are comfortable with what we are about to do. Is this accurate?

If you're determined to keep custody of her until she is adopted by the peopel you choose, be sure to check out the legalities of what will happen if the adoptive parents you chose change their minds after you have signed papers ending your parental rights to your daughter.

Wow. Does this happen often? Doesn't a transfer of custody occur sort of like a house closing, when both sides sign the paperwork at roughly similar times, so if one side backs out the other side keeps things? I would hate to relinquish custody of Heather to nobody (or the state).

You also mentioned an "open adoption"... but the description you gave isn't what is usually meant by that. ... It's important to know that in ALL adoptions, the adoption records and original birth certificate are sealed. There is no way of obtaining them without a court order (rare), or meeting one's biological parents and getting the pre-adoption records from them.

I'm a novice at this. My wife and I spoke, and our rough goals are that we want to play as much (or as little) of a role as the adoptive parents would feel comforable with. My mother-in-law was adopted, and my wife is encountering some family health issues where more information would be helpful. The lack of information isn't helping, and we certainly wouldn't want to duplicate the problem.

Our goal is to be there if necessary and not create an artificial impediment to helping our daughter. The only hope we'd have is that when Heather becomes an adult, she'd have the information necessary to find us should she choose to. Of course, if someone could promise me that Heather would turn 18 (relatively) healthy, (relatively) happy and safe and loved on the sole condition that she never see us again, I'd be quite sad but intellectually that would be a no-brainer.

But Heather is proof that life has no guarantees.

I hope you find what you're looking for, and that it all works out for your daugher.

Again, thank you all. This is a situation we're totally new to, and we are attempting to get as much information as fast as possible. The sooner a decision is made, the better our daughter will be for it.

[LukeK]

Originally posted by ChrisE
They have done better than imaginable. They are thriving. We are so grateful for them!!!

Congratulations on your two wonderful sons. It is amazing what can be done with spina bifida these days - it seems like the surgeons can do so much more to prevent damage during the closure of the spine. If you don't mind my asking, what level were your sons' lesions?

That being said, I also want to encourage you to think about giving yourself a little more time before you decide to place your child. You stated she had the sugery already, at three months she must have just had it!

Actually, Heather had her surgery when she was about 8 hours old. Because the spinal cord is exposed in a sac, there is a serious risk of meningitis or damage based on movement, so the surgeons want to close ASAP. She had in utero (mild to moderate) hydrocephalus so they shunted her at 4 days old and has been fine since.

Six months down the road it may not seem so overwhelming! It will get easier!! You clearly love your child and want what is best for her. What does your wife think about all this?

This may sound a little odd but it actually was a bit easier when so much was going on. It's just that the day after day situation seems almost like Chinese Water Torture and I can see my wife and daughter slowly wearing down (as well as myself). While her neurosurgeon has indicated that there is the possibility of getting better (the odds are certainly in her favor), no one knows when (or if). My wife and I are both terrified that we're going to be in the same situation a few years from now and lose everything. We had so much hope before and while her lower extremities are vindication of what we hoped and felt while she was pregnant, the breathing issues have just destroyed things. We kept saying "this is the last thing" and something else keeps popping up.

I posted here to get some ideas and feedback, and my wife I expect is reading everything. We've typically operated based upon a consensus, which can be somewhat informal at times, but right now we're both in agreement that adoption is something that deserves serious consideration, and right now that is our preferred solution.

[yael]

As the adoptive mother of three children with special needs, I know that there is an appropriate family for your daughter. And, given your intelligent approach to this difficult situation, you and your wife will surely make a good choice in an adoptive family.

I wish you comfort in your decision and health for your daughter.

Yael

[DianeS]

LukeK,

You asked about signing adoption papers (by birth and adoptive parents) and the timeline associated with that. No, the final papers are NOT signed at the same time.

First, the birth parents sign relinquishment papers, which end their responsibilities toward the child, and effectively terminate the legal parent-child relationship. (I don't know how the papers are worded, though, whether they relinquish custody to only the chosen adoptive parents or to the agency/lawyer, who in turn gives it to the adoptive parents.)

This allows the adoptive parents to take "custody" of the child - be legally responsible for her, for her financial, medical, educational, emotional (etc) needs.

But then, state law steps in. Most states require the adoptive parents to have this type of custody of the child for 6-12 months before the adoption is able to be finalized in court.

This creates a window of time in which it is possible that the child could be left without legal parents, if the adoptive parents change their minds. No, it doesn't happen very often at all, but even once is enough, if it's your daughter who is involved, right? If it happens, the custody of the child usually reverts to the agency or lawyer, who usually puts the child into their own private foster care and searches for another set of adoptive parents, and tries again.

I don't know if there is a way around that or not. I know some people try to get around it with guardianship agreements during the 6-12 month period, but as none of those that I've heard of have fallen apart, I have not heard about a test in court.

Most adoptive parents understand what they're getting in to, even with special-needs adoptions. Changing their minds and relinquishing custody doesn't usually happen. Just one more thing to think about "just in case", that's all.

[Isabelle]

My husband and I are in a similar situation to you. Our daughter was born with a very rare syndrome that has left her physically and mentally hanicapped and autistic. We did not know anything about this until she was born. She is now nine weeks old and we have dicided to have her adopted. It is such a painful decision.

[MOMMA LOV]

Check out all the info you can get your hands on. Have you a family member interested in adopting your daughter?
Remember checking into lawyers-consult are free. So are the adoption specialty service places. A lot of ppl do place a child like this into adoption with the state so medical can be covered.
Good luck, wish I was there to offer some help and a hug.