Saturday, May 14, 2011

Surgery denied - ready to raise his full adoption grant?

(Google has not yet restored this missing post, or the draft that contained the list of give-away items. I found the missing post floating on google somewhere else and have reposted it here below. I will have to create the give-away post all over again, and hope to have it up by tonight. I am so sorry for the delay!)

Received some bad news... but nothing that is outside His hands.

Please keep in mind that this supposedly happened, and that the opinions and decisions were made in Nathaniel's country where there is a huge stigma on orphans, people with severe medical needs and disabilities, and where doctors and medical facilities are not as 'capable' as they might be in countries such as the US.

Nathaniel was taken to a neurosurgeon, who determined, supposedly by MRI (not sure, as a CT scan is what would really determine this, not an MRI), that his head is "all water, with very little brain left." They are unwilling, and incapable of performing surgery, because they don't think it will do anything for him and he is a 'lost cause' sort of speak. Though the orphanage director very much wants help for Nathaniel, his hands are tied without approval of the doctors.

In light of that information, I urge you to please take a look at his pictures. Does that child look like a lost cause? Those pictures are less than 2 months old. He holds a bottle, looks around, grasps a toy, and his eyes are open. Logically, of course his head is filled with mostly cerebral spinal fluid (not water) and there is little brain. Not just comparatively, but the excess fluid is not allowing his brain to grow.

However, the brain, especially a child's brain is an amazing thing that can heal itself. Nathaniel has a lot going for him, and that includes his young age. I encourage you to google "Baby Klaus" (warning for graphic pictures) - an infant boy from Texas, who did not receive surgery either until much, much later. The size of his head is beyond anything you will have ever seen - his case... much worse than Nathaniel's. He received surgery and survived. The diagnosis Nathaniel received based on his "MRI", or however they determined this, is not one he would have received in a westernized country. Rather than being denied surgery, he would have received it immediately.

So, with that said, there is one thing left to do... find Nathaniel his family. The main way to do this is by raising his adoption grant and spreading word about his plight across the internet. Children listed on Reece's Rainbow who have received significant grants, have found their families quickly. I am hoping to raise $22,000 - nearly the entire amount needed to adopt Nathaniel - by the end of the month. I realize this is a huge effort, and I cannot do this alone. Please help me by donating, and spreading this blog and Nathaniel's facebook page across the web.

I will be posting a big give-away tonight or tomorrow, I am just waiting on some items to give-away. We already have a Kindle (!), another $75 Sears card, Pampered Chef items, and several other items. Please check back often for an update on that, and most importantly, lift Nathaniel up to his, our Heavenly Father.


  1. FYI, the behaviors you mentioned are not necessarily indicative of brain function. Kids with anencephaly also display these behaviors, which are governed by the "primitive brain", brain stem. (Clearly, this portion of the brain is present because he is alive.) Individuals in a vegetative state also display these behaviors; consciousness is not requisite.

    Are you a physician?
    I'm just curious, as it seems a bit odd to be second guessing not one but two physicians.
    I DO have a medical degree, and I'd never dream of diagnosing a child's prognosis without a comprehensive exam and review of diagnostic test results. Particularly when it comes to brain function in a baby.

    Indeed, babies' brains do possess a tremendous degree of plasticity, and the brain can compensate when the brain damage is minimal. But that requires the presence of brain matter -- and apparently, brain structures are absent in this patient.
    Couple brain damage with the absence of various brain structures and you're left with a grim outlook. If the physicians' assessment is correct, it's highly unlikely that this child will ever possess any degree of meaningful consciousness. It's likely he would have much function beyond those primitive behaviors; this is not a child who is likely to walk, talk, reason, etc.

    I don't see any problem advocating for a child and fundraising for his/her adoption.

    But I DO see a problem with presenting misleading information. In reality, the physicians who have examined this child are the only individuals who can assess his mental function and/or predict his potential with any degree of accuracy. But you seem to be implying that there's an underlying agenda.

    In reality, the physicians would BENEFIT from treating this child -- financially and in terms of experience. They have no reason to deny surgery unless it's a violation of the hippocratic oath.

    Please don't undermine the physicians, particularly when you have not personally examined this child. And please refrain from misleading readers -- it's extremely unethical to seek out donations under false pretenses.
    At best, you can say that he --may-- benefit from surgery; but there's equal or greater chance that he will live in something akin to a vegetative state.

    Thom Natale, M.D.

  2. Mr. Natale, I want to thank you so much for your comments - they are much appreciated. I will be posting a new post soon.

    I DO want to emphasize I am definitely not trying to mislead anyone. While I am not a physician, I have a daughter with hydrocephalus, have researched (as a layman) hydrocephalus for nearly 6 years, have been part of many communities and support groups, and am comparing Nathaniel's case to that of Baby Klaus in Texas just last year, who was in a much worse state than Nathaniel is, yet benefited greatly from surgery. All of the above give me hope for Nathaniel, in addition the fact that Nathaniel is a worthy creation, deserving of surgery and a forever family, regardless of where/what he might be in a year, or 5. He is suffering alone, and does not need to be - should not be.

    In light of that there are also no false pretenses in seeking out donations. I do not benefit, nor does anyone else, except for Nathaniel and his adoptive family. People seriously interested in adopting Nathaniel are not to contact me, but Reece's Rainbow. He is an orphan with special needs, who might die, struggle/needs lots of help for the rest of his life, or for whom surgery will make a world of difference. I hold on to and hope for the latter.

    Thanks again for your input.

  3. I'd also like to add, regarding your comments about questioning two physicians, that I am doing so with very good reason that is not beneficial to get into on this public blog. I highly encourage you to research medical care of orphans in Eastern European countries, where it is rather 'normal' for orphans to be denied surgery (I can get you in touch with many, many, many families who have adopted children from Nathaniel's country that were denied much needed surgery, despite their need for it being known). A place to start might be an organization called HisKidsToo (, but I'll warn you in advance for graphic pictures. Perhaps after you read some articles, hear some testimonies, learn about the stigma on orphans with special needs, and see the pictures, you will understand that surgery for Nathaniel is not being denied because it 'won't do anything for him.' You will likely also be shocked by how the Hippcratic Oath is valued and practiced. In a country with western medicine, where "even" a life like Nathaniel's is valued, he would have not only received surgery shortly after birth (or in utero depending on origin of hydrocephalus), he would have been admitted to a hospital, rather than wasting away in a crib in an orphanage.

  4. Leanne:

    I've been actively involved with Médecins Sans Frontières (Doctors Without Borders) for many years. I've traveled to many third world countries, including Eastern Europe and Western Asia. I have worked with hundreds of physicians from across the globe. I can tell you with absolute certainty that virtually all physicians, regardless of nationality, operate under the Hippocratic Oath. ("Virtually all" because there are rare exceptions overseas, as there are here in the U.S. and Canada.)

    I do not buy the argument that physicians in other nations are intentionally discriminating against orphans or other patients. Funding is often the most common reason for denying life-saving surgery to a patient, but that's an issue that's present worldwide, even in the United States and Canada. But that lack of funding is not the physician's burden; I simply cannot perform an operation without the proper equipment, supplies and medication. It is not the physician's burden to ensure that patients can pay for their care. The reality is, most physicians would (and do) volunteer their time and expertise to operate on a needy child, but in reality, "labor" accounts for a very small portion of the costs associated with modern medical care. Physicians who are routinely volunteering their time and expertise are unlikely to have a vast personal fortune that can be used to fund orphans' surgery.

    I am very aware of the treatment of orphans in these other nations. In fact, I am an adoptive parent myself. I have three daughters -- all of whom have special needs -- adopted from the Ukraine.

    I must also note that I never said (or intended to imply) that Nathaniel was undeserving of a family. I simply stated that it is inappropriate to contradict or undermine physicians who have personally examined this child. It is inappropriate to mislead donors into believing that this child is likely to "recover" or possess any degree of consciousness, reason, the ability to walk, talk, play, etc. The reality is, this child is very likely to die.

    If a family is willing to donate to or adopt a child who is severely disabled and unlikely to reach adulthood, that is their perogative. I don't see any problem with that.
    But I do take issue if they donate or step forward to adopt with the belief that this child can live a close-to-normal life with treatment -- that's unlikely to be the case, based on the information that has been provided thus far.

    I see a family has come forward for Nathaniel and that's wonderful. I wish them all the best. But I hope they step forward with a firm understanding of the reality of the situation; I hope they do not discount the opinion of medical professionals who have already examined this child.

    Thom Natale, M.D.

  5. With all due respect, I have said it before, your opinion and expertise in the area of pediatric care is appreciated, though at this point you are not only starting to sound repetitive, you are also unaware of what is playing behind the scenes in this particular case. In turn, I would appreciate if you do not make any assumptions about this particular case without knowing the facts, or the history of people and organizations that have been involved in attempting to get Nathaniel surgery that would have been fully funded by donors or organizations. Both the orphanage director/doctor as well as the physician that saw Nathaniel were made aware of this. Lack of funding was not the issue.

    Good for you adopting 3 children with special needs from Ukraine - honestly so glad to hear 3 others were rescued. While I am glad (assuming) that your children were relatively well off when you took them home, there have been MANY cases, particularly recently of children that have come home and were on the verge of death. All it took was a 'simple' stoma or G-tube to keep them from being so emaciated it made doctors in the US cry. So please... do not suggest that children with severe special needs in Eastern European countries are not denied surgery, or that those cases are exceptional. I have given you links/info before, surely there is more information you can find yourself.

    Leaving children with hydrocephalus unshunted is atrocious. To 'do no harm' does not only relate to life or death, it also relates to relieving pain. There are countless of examples out there of children who are suffering, who's pain can be alleviated by sometimes a simple surgery, or whose quality of life (and chance of getting adopted) can greatly be improved by surgery. To send a child like Nathaniel back to an orphanage to lay in a bed for the rest of his days without so much as relief or 'hospice' is terrible, especially when the funds were offered.

    I am glad your experience with MsF has been a good one. Surely, EE doctors who get involved with them mean well.

    I am sure Reece's Rainbow has fully informed (as far as the info available to them) Nathaniel's family and has warned them of the fact he might not recover. It is entirely false to claim that he will surely not recover. A brief browsing around for other children with hydro will show you many DO grow older, but with severely decreased quality of life). One of the most common things heard in a EEan courtroom is that the child is surely severely mentally delayed and are the parents sure they can handle it - not knowing that after the child comes home and received the love and medical care it needs, they blossom. By the way, Nathaniel's mother is a nurse.

    Lastly, this blog is not intended as debate forum. I will no longer accept comments regarding this issue, as all that needs to be said has been said.

    Thanks for your concern, your opinion, advice, and for being a part of bringing these little ones home.