January 22, 2016
There are few experiences we fear more in our role of parent than the death of a child, the absence of a child (due to kidnapping, removal by Child Protection Service, the child running away or “wandering,” or the child being withheld by an ex), or a serious lifelong medical diagnosis. Amber McCullough recently experienced all three.
A native Minnesota mother, Amber McCullough relocated to Denver on August 2, 2015 to deliver conjoined twins, Olivia and Savannah (Hannah). The twins were delivered in late August. As expected, Olivia passed away soon after birth, but Savannah survived and continues to receive care in the Neonatal Intensive Care Unit (NICU) of Children’s Hospital of Colorado (CHOC). Recently, the family made headlines again with the suspension of Ms. McCullough’s NICU visiting hours, that she contends was done in retaliation, not for Savannah’s well-being.
Amber and Savannah McCullough
Ms. McCullough had filed a complaint after a nurse made a medical error and refused to call a doctor. Additionally, there was a delay in reading the related CT scan that identified a medical concern. This happened November 17. Prior to this event, Ms. McCullough had expressed concerns with continuation of a medication for chylous ascites (build-up of fatty fluid in the abdomen, secondary to traumatic injury or obstruction) and asked for a contingency plan, including a surgical alternative. She also expressed concerns with the Twin to Twin Transfusion Study outcomes and the qualifications of the surgeon involved.
Ms. McCullough has been chronicling her experience with CHOC on a public GoFundMe page. From update #47,
I know a lot has happened and I am singing a very different tune about this hospital but I have seen a lot, been through a lot and I tell you if you are thinking of CHOC, RUN. No doctor should ever tell you that they are the only one who can care for your child or discourage more opinions.
CHOC has accused Ms. McCullough of impeding her child’s doctors’ rounds (when the doctor visits patients for case presentation to medical students and status updates) after the November 17th episode. Ms. McCullough, however, said the doctor agreed to spending time with her, on November 19th, to address her concerns and questions about Savannah’s extubation, an apparently reasonable request. Ms. McCullough’s visits with Savannah were initially unlimited, without restrictions, which makes sense because it is well known that the more time medically fragile children have with their parents, the better the outcome. After this interaction, however, Ms. McCullough’s visiting hours were placed under the management of CHOC’s NICU Nursing Director, Paul Ocon, and as of November 19, her visits were cut to two hours a day by the hospital administration and she was barred from speaking with another NICU family in a similar medical care conflict. The hospital discovered that Ms. McCullough had been recording visits, prior to and including the November 17th episode. As of November 24, Ms. McCullough’s visits were increased three hours a day and it continued like that until January 5, when Mr. Ocon completely suspended her NICU access.
After the story broke January 6th by local Denver TV, Ms. McCullough attempted to transfer Savannah to Boston Children’s Hospital (BCH). But, unexpectedly, there appeared to be “no admitting doctor,” despite a prior understanding via email between BCH and Ms. McCullough, and “no single case agreement,” which insurance (Medicaid) requires for transferring care to another facility. The absence is concerning since private transportation was secured by way of a medical flight company by Ms. McCullough. Only CHOC could have impeded the transfer to BCH — perhaps eyeing the blank check a Medicaid patient brings? As of late afternoon on January 6th, probably due to the press attention, 2016, Ms. McCullough’s visiting hours were partially restored to four hours a day.
Baby Savannah
Like her mom, Savannah continues to fight. The latest health update details Savannah’s surgery and subsequent emergency intubation after accidentally removing her own breathing tube placed during abdominal surgery on January 13th, 2016 without her mom present. Ms. McCullough notes that this never happened while Savannah’s primary NICU team and parent were in her room. Could the restricted visits be doing more harm and exposing Savannah to unnecessary risks?
The headline “Mom being denied” swiftly moved through my newsfeed — reminding me of Justina Pelletier’s case. As in Justina’s “public trial,” social media comments quickly veered off to speculation – questioning many of the mom’s decisions, judging and defending the hospital and NICU staff: Why does child need to be relocated? Why does mom need to apply for Medicaid? – eventually veering to politics and opinions that had nothing to do with Savannah or Amber McCullough. You can read Ms. McCullough’s account of Savannah’s care at her GoFundMe page. You will find 50+ updates since June 2015. There is also a Facebook group, Rights for Savannah. Don’t bother with the speculation. Read Amber’s first-person account.
The “he said/she said” aspect of this and the restriction of Ms. McCullough’s parental rights also reminded me of Allison Folmar’s presentation at Autism One:
Allison Folmar is a child custody attorney in Southfield, MI. She begins:
I want to give you some words of affirmation and empowerment. Everyone stand up. I want you to say . . . and you can put your finger in the air . . . you can shake your head . . . put your fist up . . . however you feel comfortable . . . you say it with power and vigor. You say: ‘The Constitution protects me, as I protect my child. My child (say your child’s name) belongs to me. He or she does not belong to the state.’
Or, in Amber McCullough’s case, “Savannah does not belong to the hospital.”
We should fear the experience of our children’s passing or their absence. We should not fear taking our children into any medical setting because it’s possible we may dispute care or seek a second opinion and consequently lose our parental rights. Amber McCullough is an involved and informed Thinking parent, advocating for her family. She is challenging the status quo to effect change at the legislative level:
For those that have ran (sic) into issues of abuses of power and violations of patient and parental rights in the medical system, please feel free to share your story on this page as well. I need awareness for Savannah’s situation however, we as parents need awareness at a greater level to start advocating legislative change to protect our children’s and our rights. I hope this page can help advocate for Savannah AND any other child who has been through anything similar to this or is going through anything similar to this.
Amber McCullough continues to advocate for medical accountability with
Our most sacred rights are our rights as parents. We need legislative action. We need Justina’s Law to pass congress to combat the medical system’s number one motive for such violations of parental and patient rights. We also need a legislated schedule of criminal liability and minimum financial liability for such offenses by the medical system in order to deter such atrocities and give parents more effective and faster access to recourse in such actions.
We know these medical kidnappings happen all too often in the mitochondrial disease community — the most recent being Justina Pelletier and the Diegal Sisters. Isiah Rider, Cassandra Callender, Ariana Godboldo, Daniel Hauser, Sammy Nikolaev are all examples of medical overreach outside the mito community. Medical facilities and doctors have been overreaching their authority for decades with little change. Before I started Thinking and advocating, I naively believed that hospitals just didn’t do this “without cause” — if at all. We had just started on our journey. And then a church friend’s son was born with a BH4 deficiency; the hospital took temporary custody of child during his treatment, not trusting the family would do as they “recommended.”
These stories are a just a small sampling of the many abuses of power occurring in medical settings, so please share this request and get these stories compiled by Amber’s legal team and heard by your federal representatives.
~ RogueZebra
For more by RogueZebra, click here.
After the money rolled in…Amber rolled away and quit posting updates. It seems there’s something not quite right, but I hope the baby girl is thriving.
I quit updating GoFundMe because I and other advocates had started Rights for Savannah. I also update regarly on my personal FB page. Some peoe mistook me updating people on GoFundMe as still asking for money though many people followed for the updates and it was a substantial forum I used to keep them updates. I have continually updated the public on my daughter’s progress. I’m sorry if you didn’t know where to find those updates but I do not appreciate what you are insinuating.
It’s strange that once Amber had petitioned the court for child support there is this strange troll appearing in some comments claiming to know her.
Her ex boyfriend, father of Savannah and Olivia is a republican lobbyist in Minnesota who was very angry about not having a say in whether to abort the girls. He was angry that he couldn’t single handedly decide to terminate. Before the complications he asked for an abortion and then things just got worse because as they learned more about the complications, the more he pressured for abortion. She left after he became abusive. He has not been showing anyconcern about the girls but has shown great concern in concealing his identity as their father. It would look bad for a republican lobbyist to be found behaving as he has and demonstrating hypocracy in such an extreme way.
You don’t hear this as part of her story publicaly because he has been very concerned with gagging her through the courts.around the day she was to give birth, he was petitioning the courts trying to further enjoin her from being able to even say the words “their father”. She was advised by her attorney not to even name him in Olivia’s obituary because he would try to haul her away to court in MN over it always from Savannah’s bedside.
He has NEVER once asked for arrangements to see Savannah. Amber filed back in October or November for child support and allocation of parental rights. It seems like he assumed savannah wouldn’t make it and now that she clearly is making it, living, he is trying anything to make himself look like the victim and her a villain to include trolling on these sites.
It’s easy to write an article like this when you are getting one side of the story-anyone ever wonder if this mom is a nut job since she is all over the media and her story changes constantly? If you read all of her updates (on the several social media sites, news stations) there are inconsistencies and if anyone posts anything negative about her she takes the posts down. I have been following this story from the beginning since I am from her hometown and know this woman is a total manipulator who loves the attention she is getting from the media. This is what she chose for her daughter. A lifetime of hospital care-no matter what hospital she is at, she will not be happy.
“This is what she chose for her daughter”? Are you implying that she CHOSE to have conjoined twins?!
I also know this person and you are spot on CJ. I have known her for about 4 years now and have witnessed some pretty ugly stuff with her and relationships. It is interesting the corollary that can be drawn from her relationships to the way she is treating the hospital staff… ahhh if only I could be a fly on the wall in that hospital to get the true story. I have watched her move from relationship to relationship and do exactly what she is doing to the hospital to the guy. She tries to drag him down and publicly humiliate the person for personal gain. She is evil and a horrendous person. I don’t think anyone deserves this type of thing to happen to them, but IMHO it is karma for the way she has treated people in her life. It is a sad thing what is happening, but i can guarantee you that she has made it more difficult for the hospital to provide effective and adequate care for her child- all for her self-righteous notoriety.
Professor, I am pretty sure he is not implying that, as that would be an impossible choice that no one would have any ability to make. I believe he is implying that this woman chose to transfer to this hospital from the local-well established hospitals in Minnesota (i.e. Mayo Clinic). Or he could be more politically charged and been inferring that she chose not to have them both aborted early on once complications were identified (not saying I agree or disagree with this stance… that is an argument for another day and I will save my personal views for that time) instead of bringing a child into this world that will most likely suffer.
“Informed Observer” and “CJ” posts are actually written Brian McDaniel, the absent bio father of Savannah and Olivia.
And yes my child was removed from the safe and loving care of his parents against his and our desires, because Miralax had an adverse effect on him! There are other parents…and more children who have suffered! The world needs to know!
FaceBook with almost 2,000 members
“PARENTS AGAINST MIRALAX”
This drug polyethylene glycol is a cousin to anti-freeze and damaging children. Miralax is not approved for use in children and in 2011 the FDA warned against Possible NEUROPSYCHIATRIC EVENTS.
Children are suffering!
Please be aware as doctors tell parents all over the USA that it is SAFE! Why are there so many parents up in arms with children who have tics, OCD, aggression, pain, symptoms of autism…BEWARE!
OMG!! Please contact me ASAP. My daughter has been taking miralax for four years. [email protected]
Here’s the deal, hospitals are business. We like to think that that people working there are altruistic, that they really care about the patient’s best interest. In my experience, most do. However, it is important to remember that $$$$$ are their bottom line.
When their customers do something that makes them nervous about their bottom line, they resort to every power they can to protect their viability. Imagine someone is videoing where you work. Imagine where you work involves matters of life and death.
If you are grasping this, in the big picture, you begin to see to see that we must work together. We need to keep each other informed and not do things that scream LAW SUIT.
Here are simple guidelines to success:
Ask questions
Be respectful
If you are not comfortable, find other care politely. (How much simpler it would have
been for mom to say, “It’s time for us to be close to home. Thank you for your work.
How soon can we arrange a transfer?” As it is, the hospital will warn the next
provider about possible law suits and Savannah will be lucky to make it out alive.)
If there is serious negligence or abuse, write it down and let an attorney deal with it.
I understand and appreciate your premise that people need to work together for optimum outcomes. I also agree with your assessment that the average health care provider really cares about their patient’s best interests, but I think you’re basing your comment on some assumptions that I’d like to challenge. The first is that hospitals need to be for-profit businesses. There are many countries around the world where they are NOT for-profit businesses. Therefore, $$$$ are not their bottom line; happy, healthy clients are. With that basic change, the entire attitude of the medical establishment changes to one of caring for the sick from one of caring about lining the stockholders’ pockets. When that changes, the outcomes have to change.
All of that aside, however, parents can do exactly as you say and STILL run afoul of hospital “guidelines,” “policies,” or “procedures” or come up against a doctor with a particularly fragile ego who doesn’t like their authority threatened. When that happens, very often the hospital has the power to take retaliatory measures that are bad for parent and child, whether or not either did anything that was not respectful and completely within their rights. The same thing frequently happens in labor and delivery wards, where “routine hospital procedures” that are not evidence-based are pushed upon women who would have an easier time of it if they were simply left alone to do what their bodies want to do.
But that being said, what happens when a child gets medically worse being in the State’s custody, ie Justina and Isaiah , to the point of becoming so sick that they could have died. Parents were not allowed. Terrible things happened to them. There was the lack of or no schooling. Lot’s of people are not doing their jobs when a child suffers or continues to suffer at the hands of people who think they know better, especially, when their is proof.
Amen. If a child gets worse in custody, that should be apparent to all concerned and it should be absolutely unacceptable.