Friday's Featured Cause is a new series I have started to bring light to the many causes we advocate for and support. This week's Feature is from Robin. For more information on the series, please click here or see the sidebar.
"Your son’s heart is the size of an apple and it should be the size of a walnut, said the nice doctor who was called in to review Jack’s emergency echo in the step-down nursery of the children’s hospital where my ‘31-week’ twins were supposed to be “feeders and growers.” He may need a heart transplant."
I am staring, but it is not registering. The room is spinning. I am trying to breathe, but I can’t quite seem to get air in and out. I must sit down. I witness a flurry of activity as I can hear them talk about intubation, drug-induced coma. I feel like I am watching a scene from “ER.”
Fast forward more than five years and this drama moved from the small screen to the big and plays out like a feature film. The world kept spinning from that day on in 2004 and then abruptly stopped in April 2008 when my son, Jack, simultaneously mouthed and signed the words to me “All done Mama, all done” through his C-PAP mask when I arrived in his hospital room. No more. He was done fighting. No more cutting, no more fear. He wanted to have the last word.
So it was that day he earned his angel wings -- April 14, 2008. A day I will hate for the rest of my time on earth.
Press the reverse button on the DVD remote and rewind the story. What happened from that summer day in July 2004 to April 2008?
Jack was transferred to a new hospital after being evaluated as a candidate for a heart transplant. We learned that his heart was enlarged and not able to squeeze effectively. A conditioned called cardiomyopathy and likely caused from the viral infection I got while pregnant. He would either get better or need a heart transplant they told us.
He received an angel heart on October 17, 2004 at the age of four months after waiting 72 days on a ventilator. He smiled a big grin as they wheeled him off to the operating room to remove the heart that we gave him and place a new one in from a child who had a tragic ending. In a matter of six hours the world as we knew had changed completely.
They told us nothing about the angel heart. Not what happened to the donor child or what state it was being flown in from? We just knew the child had the same blood type as Jack and was somewhere around his size.
The heart did not function well from the beginning. We heard comments from the doctors that it was in “shock” from being “on ice.” We learned that the heart was out of the body for the longest amount of time possible for transplant. That meant the heart came on a plane ride anywhere from 4-5 hours to Minneapolis.
With the help of a lot of drug support, Jack’s donor heart functioned adequately so that he was able to finally join the real world and be reunited with his twin brother, Cooper, at home for the first time at seven months of age (Cooper had no health issues).
It is amazing the healing effects that a loving home provides for children, both mentally and physically.
The years between 2004 and 2008 were spent making many happy memories, but they were not without drama. Jack had many up’s and down’s with his new heart -- more than half of his life was spent in the hospital (two Christmases, one Thanksgiving, one birthday). He needed a pacemaker as the natural pacemaker in the donor heart was really screwed up (his heart rate would get too slow, or he’d get SVT and require cardioversion). Then the pacemaker wires fell off. It was after his third open heart surgery that they told us he would need a new heart. This donor heart was not going to work. It was too stiff and there was nothing they could do to support it. No drugs to solve that problem.
Another experience where the room is spinning and I see their mouths moving, but I can’t make sense of what they are saying.
There was one big problem (as if being told your child has to endure another critical surgery isn’t enough), Jack’s surgeon (otherwise known as “The Witch Doctor”) said she wasn’t sure he deserved another heart. She thought he did something to the donor heart. Huh? Now, we had a contentious relationship with this woman from the beginning. It had something to do with everything about her. She was loud and a foul-mouthed bully. She was a bull in a china store. It was her way or nothing. She did not like to be challenged or questioned. I will never forget the cold stare of her beady brown eyes for as long as I live. To this day, I still question whether or not she really had a heart and I am certain that the devil does walk among us.
Her take was that maybe Jack had some congenital disease (like ALS “Lou Gehrig’s disease”) that did something to the donor heart, and if so, they are not wasting another heart on him.
After unnecessarily wasting the summer of 2007 battling with her, trying to get a second opinion of which she was not happy about, and ultimately trying to get Jack into another program in another state, she finally agreed to re-list him. Jack was able to go home with a PICC line in his arm that delivered life-sustaining medication. He was much weaker, could not walk without the use of a walker, and his fluid status and kidney function were always major concerns. But he was happy and reunited with his brother.
The witch doctor would not list him as a 1A (top of the list) unless he lived in the hospital. If he was going to live at home, he would be listed as a 1B.
Jack went to preschool with his brother (and a nurse), as we were trying to make life as normal as possible for him. He loved school! Even though he would get very tired and his tummy hurt a lot, he loved going to school.
We had a nurse come weekly to our house to draw labs as we needed to keep a check on the functions of his organs. The hospital urged us to bring him in-patient so his transplant status could be upgraded to 1A and we get him a heart faster. His labs were starting to decline.
It was the second worst mistake of our lives. The first was going to the University of Minnesota Children’s Hospital in the first place. (At the time we went there, we were new parents, distraught, and didn’t know anything about anything.)
We thought we were making the best decisions for him. We trusted.
The intensive care unit where he resided was not the same as when he was a baby. The nurses were over loaded and forced to double up on critically ill children. They were forced to do more with less. It was awful. Attending physicians were visiting from other hospitals and were overloaded and it would take three days for them to get up to speed on the patient load.
Right after Valentine’s Day, Jack acquired hospital-grade influenza B and his PICC line was infected with another patient’s poop. It made him horribly sick. He suffered. He got so fluid overloaded that he no longer had a neck.
We knew we were losing him.
There is so much more to this story…the in-between details…like the surgeon accusing us of making him sick because we were run down, her downgrading him so she could go on vacation, but not telling us…
The day he died, they had decided to intubate him and put in chest tubes to remove the fluid that was building up around his lungs. Jack knew what they were doing and didn’t want it. He was fighting the intubation and biting the tube. He was done – “All done Mama, all done.”
On April 14, 2008, I held my son for the very last time on this earth. He was finally at peace. He didn’t look like my son as the extra fluid on his little body had changed his physical appearance. As day turned into night, I sat there holding him in the rocking chair where I had logged too many hours rocking him, as if I could somehow stop time and not face the inevitable. “Twinkle, Twinkle, Little Star” played on the CD player, over and over again. We knew we had to leave. We had to get home to Cooper. But how do we walk out of this room?
Some of the nurses had packed up Jack’s room and belongings and loaded our car for us. Our babysitter had Cooper, so it was just Todd and I.
The charge nurse came in to check on us. We were sitting in the dark except the light above the sink. She knew us from our long tenure there. We asked her to please make sure they treated Jack with dignity as they came to pick him up to take him to the morgue. We requested no autopsy. No more cutting.
And just like that we were supposed to walk out of the hospital with one less child in our lives.
Our loss, Heaven’s gain.
It was only three months later when we starting investigating things about Jack’s medical care and we accidentally learned his donor’s identity, Baby Richie. We learned he was three months old, also premature, and his “father” broke almost every bone in his little body. He had cigarette burns, damaged lungs and ultimately, brain damage from his “father” hitting his head against something. We learned more about his story when my husband visited his mother in prison. She is serving out an 18-year prison term in New Mexico for her part in her child’s death. She told Todd about how her husband would shoot her with drugs while she was pregnant and beat her. He beat her up and that’s when she went into labor and apparently went into cardiac arrest at some point while she was delivering Richie. The day that Richie died at the hands of his ‘dad,’ she was out asking family members for money. Her husband was at home alone with Richie and getting high. According to the police report we were able to obtain, after he found Richie not breathing, he went outside to bum a cigarette and smoke it before he came in and called 911.
The district attorney in the state of New Mexico called baby Richie, “tortured.” It wasn’t just child abuse, it was torture. We told baby Richie’s mother and her parents, who were the ones to ultimately sign the papers for organ donation, that little Richie’s heart received an abundance of love while it was with Jack.
Baby Richie’s ‘dad?’ He hung himself in jail while awaiting arraignment.
We now know why Jack’s surgeon didn’t want anyone else getting involved with his case.
We are currently involved in an investigation into Jack’s care. We have involved our Governor’s office, state senators and the Office of Medicare/Medicaid, who found the U of M program to have deficiencies.
What advice can I share about my son’s journey in healthcare?
- Advocate for your child. Speak Up!
- Know that you are the most important person your child’s healthcare team
- Get a second opinion without the aid of the current doctor. Have it be completely objective
- Talk to other families whose children have been operated on by your child’s prospective surgeon.
- Take notes and write it all down. Have a third party with you when discussing your child’s plan of care. You are stressed and might not hear everything you need to.
- Don’t be afraid to have people removed from your child’s medical team, but know it could be an uphill battle.
- Sometimes traveling out of state for your child’s medical care is the best option. It is just a small amount of time in exchange for the best care.
- Check the medicine that is being administered to your child in the hospital.
- If you are headed for a transplant, get informed. Seek out people who have been down the road. Don’t just speak to the people that the hospital suggests. Be armed and informed! Transplant and listing is a complex system!
- Question, question, question
- Take lots of pictures in the hospital – the good, the bad and the ugly. Hopefully, it’s to show your child how absolutely remarkable he/she is and what he/she has already overcome at such a young age!
Robin Hicks-Corbo and her husband, Todd, are advocates of healthcare rights for children and ethical practices of medicine. They have a Caringbridge website (www.caringbridge.org/mn/corboboys) and are currently working on launching a website that tells their story and offers help to others families facing medical care issues. They are also writing a book on their experience. You can also follow their Tweets on Twitter at: @Justice4Jack and @renegademama
