Hannah and Olivia McCullough
Savannah really started to struggle last week. She had what appeared to the nurses to be a seizure. She had an amazing nurse who advocated for an EEG. I empathized for her having to tell me about her seizure-like episode that occurred early that morning and the EEG that was hooked up to Savannah at 11am, when I walked in the room at 330 to discover my daughter hooked up to a brain monitor. No one even called me. It wasn't the nurse's fault though. I understand that someone else was supposed to call. I'm not allowed to complain though, that's what got us in this restriction mess in the first place so I don't. All I could do was passively say," gee I wish someone called me".
The EEG did not find a seizure but did find abnormal activity predisposing her to likely have seizures. These episodes involved her eyes rolling back, O2 saturations dipping as low as the 30s, twitching repeative movement in her her arm(s), and tongue thrusting. This description is what the nurses have reported to me as I was not there during these episodes - I was restricted. On Friday she had 12 episodes in a row over 4 hours and I was not called until after and could not go to the hospital because I had already had my 4 hours for the day.
My attorney zealously and very effectively advocated for us over the weekend and was able to get the remainder of the weekend to be unrestricted since Savannah was struggling so badly on Friday night. Lifting the restrictions for the weekend was a decent good faith showing on CHCO's part as well. I have to acknowledge that as it is only fair. I still maintain that I should have been called when these episodes were happening on Friday and all the times before when she would have these episodes and been able to be at her side.
They did an MRI yesterday of Savannah's brain. There was a tinyt brain bleed on her right side that has been there a long time. They see that often in premature babies and are not worried about it. They also saw a mildly smaller brain than they would have expected for her age. However, that happens to children on frequent TPN intravenous nutrition. The doctor said she should be able to grown out of it. Still, she is now at a far greater risk for developmental delays. All the more reason to have her mom there talking to her and engaging with her promoting that development. A child in a crib staring at the walls alone would be at higher risk for delays. Add in the other effects of her long NICU stay and she is at a substantial risk for delays. She needs her mom.
Yesterday, CHCO released a letter stating in length how it is not admitting any wrong and continued to wave their finger at me with their lies. However, it also stated that I would be permitted to have 6 hours a day per week with her this week, 8 hours a day next week, and then on the 12th, lift the restrictions entirely. While this does not lift the restrictions entirely right now, it is a step forward in the right direction. I am cautiously optimistic.These restrictions should have never been imposed in the first place. They have fabricated pretexts for the restrictions in the first place and have since made up lies so severe in an attempt to keep me from her entirely. My trust is non-existent. I still have to walk in that building fearful every time and paint a smile on my face while enduring that kind of stress and fear. I'm having a hard time believing they wont try to fabricate more pretexts to keep lifting the restrictions coming to fruition. I hope that I'm wrong.
They called me last night, a group of them (the social worker and I think risk management) on speaker phone to discuss the new restrictions. They are not supposed to call me to talk about the restrictions without my lawyer present. They know this and they did it anyway. I answered the call because it comes up on caller ID as Children's of Colorado and I have no idea if it's an emergent issue with Savannah. Then I was stuck in the awkward position of having to answer questions like "what do you think" when I can't answer those truthfully.
If I were given the opportunity to answer that truthfully, I would have told them that while these restrictions are better than it has been, this should have never happened in the first place an the restrictions need to be lifted completely. I would have expressed my concern over their lies. I would have discussed my concern and fear that they will continue in that behavior. I would have told them how my daughter and family has been damaged by this. I would have told them how traumatizing all this is and has been for me. I would have told them that they should consider doing the right thing all the way by lifting everything completely and apologize for all the damage they have caused. I have lost a daughter and have a daughter who has life long medical issues. That is stressful enough.
For the rest of my life, I must live in terror and so does she, terror of being treated like this moving forward, terror of something going wrong because I might get in trouble if I ask about it or if I file a complaint. There is no complaint process for us to utilize that wouldn't result in further risking her health and access to her own mother, eviscerating my rights and hers.I'm left feeling jailed to the whim of an organization that has proven to be deceitful and cruel. CHCO has destroyed our trust in them and at this point, the medical system at large. Yet we are in a situation where we have no choice but to continue on in the medical system - in this hospital because they have been lying to any potential transfer hospitals about me. I would have said a lot had I been permitted to answer their questions honestly on the phone without my opinion being considered a "violation" of something. I've been dealing with them long enough to know that the better thing to do is to tell them what they want to hear, never disagree, and never complain.
I hope this is a step forward. Only time will tell. One thing is for sure. This happens all too often in our medical system. I have encountered and struggled with the unchecked powers of the medical system, the effects of patient and parental rights not having a clear, efficient, and effective way to enforce them, and the resulting medical kidnapping issue at large in our country. I hope this is a step forward in our situation, for Savannah's sake. However, even if our specific situation does continue to improve, I've learned just how at risk we are for something like this to happen. The ONLY way to secure change and ensure my daughter and other children in the medical system are protected long term from such abuses of power is legislative change. We need a federal patient bill of rights passed that also includes a strict schedule of substantial minimum penalties criminal and civil for violating patient and parental rights through the medical system. HIPPA is enforced because there is a legislated schedule of substantial penalties for violations both criminal and civil. We need that deterrent effect and we need a clear means of obtaining effective and efficient relief when such violations occur.
Still, they need to lift the restrictions entirely as they were out of reprisals for utilizing the very complaint system in place to protect patients and families. I still only have 4 hours a day. I'm not threatening to sue them. I am suing them. This should never happen to anyone and I'm learning it happens all the time in our country. I have room for grace and forgiveness for the hospital but those things can co-exist with accountability and enforcing patient and parental rights. Which is why I will not drop the law suit.
Recently I asked them again why they haven't lifted the restrictions. They had no explanation to provide besides "it's behavioral based" and to "stay off social media". Last I checked they don't have the right to eviscerate my 1st amendment either. It is also highly illegal for them to consider anything on social media our the media for her care. The patient bill of rights also states that patients have a right “not be isolated or restrained in any way, as a means of control, punishment, convenience or revenge by the staff". Yet, that is the best way to describe exactly what they are doing to my daughter for me having filed complaints and subsequently for taking legal action and exposing their corruption/violations of my daughter's and my rights to the press.
Someone criticized me for having posted a clip of a conversation with one of her nurses and called it "disgraceful". What's disgraceful is keeping a mother who just lost a child a way from her surviving daughter as a means of retaliation for filing a complaint. Above all, what's disgraceful is isolating a little girls who is very much aware that she has lost her sister since they were literally attached at the hip, stomach and chest, a little girl who still has many obstacles and is in critical care from her mother. We also know that developmentally this is an important stage. By keeping her from me, her mother, they are also adding developmental deficits to the many mountains she already has to climb in life.
I have no shame whatsoever in exposing the hospital and demanding accountability. What alternative do I have? Abandon her needs and quit advocating for her? Never. I'm attaching more clips that further show that even my daughter's nursing staff were confused as to why there were restrictions. Beyond that, they even expressed being upset about the restrictions and at one point even states how it's harder for them to do their job. They recognize that my daughter needs me.
I have much more where this comes from and will post more. People needs to know that this is not some fictitious story and it happens far more often than they would ever realize. I would have a hard time believing our story if I weren't living it. This is where the recordings come in handy.
Hi Amber, you and I share a very similar story. Watching your story on kare 11 was almost like reliving it all over again. I too faced a very real and very difficult decision with my twin girls. At 14 weeks( Christmas last year) my husband and I found out that one of our girls was very ill and would likely never make it to term. We too were told many many times to consider to terminate our daughters for fear of me falling ill as well. We were also cared for at the U of M maternal fetal medicine. They referred us to Cincinnati Children's for every possible test with every type of doctor there is. The end result was that we had to do something or I would lose both of my girls. We had to choose. We chose to get laser surgery to split the connections in the placenta they shared. In a way creating two separate placentas. One for each of our girls giving them both a chance for survival and leaving it in gods hands as to when our daughter we named Alma would pass. We knew she would pass it was a matter of when. We received the surgery at 18 weeks, came home for our twice a week ultrasounds at the U of M and at 21 weeks our Alma was an angel. I will never forget that appointment. I always had them check the girls heartbeats first just so I could see that little flutter on the screen. As I am sure you know after going to so many ultrasounds you begin to know what you should be seeing. I noticed there wasn't a flutter before our ultrasound tech. Our surviving daughter Matilda was still thriving and continued to do so for weeks. I was induced at 37 weeks, had a perfectly normal and healthy baby girl. Matilda was born first and Alma second. Since Alma was ill for sometime and I continued to carry her after she passed we were adviced not to see her. I never got to hold my baby but we did get her little handprints and had her cremated. Before surgery we also met with our pastor and had my belly blessed and prayed over since I would never be able to baptize her. Her remains are at home with our family and not a day goes by that I don't wish for things to have gone differently. To be able to watch both of my girls grow up. Matilda is two months now and is still thriving and developing completely normal. She is our whole world and we are so so thankful to be parents to both of our girls. I'm sorry if this seems like a lot to hear for you right now. I felt as though you may need to hear from someone who completely understands. There is hope. You are not alone. My heart is breaking all over again for you. You are so strong( even on those days you certainly don't feel strong) please know you are. When I was going through this I desperately wanted someone to relate to. I live in Rosemount so not far from Hastings. I am a stay at home mom and will be here if you need someone to talk to. Even if it's months or years from now. Please keep believing in the power of God. I hope to one day hear from you. Sending my prayers to you and your family.
I'm the Director of Support for the Mothers of Multiples Society here in Denver. We are moms helping moms and we would love to offer our support during your stay in Denver. Please contact me so we can see how best to help you. firstname.lastname@example.org
I just saw your story and I'm in tears!! I, too, have an Olivia who is soaring in the sky. Her twin brother just turned 6. Maybe our beautiful girls will meet in the sky. Each story is different and, in many ways, we can't truely understand anothers suffering. But, know that there are many of us who have experienced a similar loss and we are praying for you today and in the days to come.
Amber - I first heard your story on the news this morning. You and your girls are in our prayers. I gave birth to twins at 26 weeks - Amanda is now 11 with Zachary as her guardian angel. She has soared over many hurdles. I am here in the Denver area but am a Minnesota native. If you need another shoulder or encouragement or even if your step mother needs anything please feel free to contact me.
Seven years ago, we lost a child, and yes, there is a huge guilt that comes with that. Did I do something to anger God? What if I had done this differently? Or that? And then I became very angry. I did well to survive. I searched for years for reasons, explanations, and then I came to a place where I didnt know what to do or think anymore. It was a very scary place of silence. And yet through this I still felt God. Through it all, I felt him holding me, grieving with me, asking me what He could do to help me. He was a warm blanket wrapped around me in my darkest moments. He made every stop light turn green. Every person I met kind. The world was gentler, kinder. And I felt a love through this pain like never before. Slowly the hole that had been ripped through my chest the day my daughter died, that same hole that I swear everyone could see through, huge and gaping, the one that left me just a shell, slowly began to heal. And in that process, I am different. I'm also kinder, gentler, and look at the larger picture of life. I know we are all connected in time and space. My daughter did not die for me to grow. She didnt die because of something I did or didnt do, or to cause something in this world to change. God loves her too much for that. She died because she was sick. That is all I know. That is now enough for me. And I can live my life in the moment, loving those around me, including myself. Losing your child is learning to live without an arm, a brain, a heart, you will never replace her, even with her sister. You will love her where she is now. In Gods loving and protective arms. Huge hugs from one mom to another. It takes time, lots, and that is OK.
Amber, I will be sending you warmth and love during this next part of your journey with your sweet babies. I am a mom of twin boys, a singleton and also the mommy of my angel baby, my daughter Bella. She was born at 24 weeks and was called home about an hour after birth. The road ahead will not be an easy one but it sounds like you're getting the support you need. I also live here in Denver, born and raised. If there is anything I can do for you, anything at all please contact me. Even if it's something as simple as recommending a nice park to spend a quiet hour or a restaurant near you. Maybe your sweet one will meet my Bella in heaven. Know she will not be alone. And she does know and feel your love, of that I have no doubt. Sending you love, strength and many hugs ♡
Ive tried all denver news to get my story out about what same hospital did to my child including taking away her care and medications , i reported them for false diagnosis and they turned and made claims that i made bomb threats ,,this is my 4th time o here to get amber my daughters story to add to their own in this matter
Hon, I think you are doing a wonderful job protecting your Hannah. Yes, CO is not a place I would suggest anyone to have children, and I cannot WAIT for the day you can get her out of there! I am very proud of you for having the courage to post your recording, and I think it needs to continue being done if they want to continue restricting you, lying about and to you, and putting Hannah's life in danger with subpar treatment. I am hoping in a couple of weeks I will be able to donate SOMETHING to you.
I can't financially offer support but your story touched me. I can't imagine your day to day struggle with everything that's going on. You and your babies are in my prayers! It's not much, but what I can offer is to do Paralegal services for you if/when you find yourself in a legal battle with your girls' father (if you don't already have an attorney). I recently graduated from NAU's Paralegal Studies program with an Associates Degree. I know Paralegals can't represent clients, but the way I see it is if you are representing yourself then I am just assisting you. I don't know if that is something you are interested in or in need of, but if you are please send me a message and I can get you my contact info (and even a sample of memorandums I've written for school if you want them). That way you don't have to waste time on research and writing when you could be spending that time loving your son and taking care of yourself.
I just saw about the twit who keeps harassing Amber, accusing her of defrauding the public and other such nonsense, Suzan Anderson DZubay, and this is harassment flat out. I think she needs to be banned from Gofundme altogether. This page is to help save Hannah, not to barbeque and crucify her beseiged mother.