Wednesday, October 20, 2010

A shattered trust

I'm grateful to one of our readers for sharing the following story.

A shattered trust

When my daughter was discharged from the NICU her neonatologist encouraged us to keep in touch. “We love to get photos” she said. We did keep in touch, but lately I don’t want to send photos.

I worry that in sharing photos with our medical professionals they’ll assume we’re okay and feel they don't have to worry about us. This makes me sad, because it would take such a load off my shoulders if I felt some doctor or nurse – anyone – would worry about something for me, instead of minimizing or ignoring my concerns.

My daughter is chronically sick, which means we need to get in to be seen quickly, but we have ongoing problems with clinic staff and doctors who don't return calls and pages. Nurses frequently dismiss my concerns about my daughter’s health. One doctor failed to respond to two pages, an e-mail from another doctor and a message I left on his voicemail. Instead of saying “I'm sorry I didn't call you back,” the doctor suggested there was a misunderstanding.

When people make mistakes and I ask for change, explanations or at least acknowledgment of what happened, I get yelled at. Both doctors most central to my daughter's care have yelled at me and though she has more specialists and sub-specialists than I care to count, there is not one I feel I can truly trust.

For almost a year I’ve made over 30 calls and worked with six hospital departments to find a way to better handle my daughter’s g-tube changes. My daughter is petrified of the procedure. Her hips are strapped down but I have to hold her arms while she screams, twists her upper body and turns bright red. The first time it happened I had flashbacks to when I had to restrain her for procedures in the NICU. So I've spent months trying to come up with an alternative. I’ve asked for sedation, but been given conflicting information about whether it's safe. I've asked for a child-life specialist to provide support. I've sat outside the procedure room, listening to my daughter (with my husband) scream inside. I've asked if the ‘comfort kit’ is in the room with them, only to be told it’s sitting behind me in the waiting room. I’ve asked if I can take the kit to the room and been told "No." We’ve left in a g-tube that should be changed every six months for 15 months because we can't find a solution to managing our daughter’s pain and anxiety.

I'm also reluctant to share photos with doctors who I feel made decisions for us and not with us. When my daughter was on a ventilator in hospital we asked to have a discussion about how aggressive her care would be. The doctor said “We'll come back and talk to you,” but no one came back.

This is not the life I imagined for my family. Truly, it is not something I could have imagined.

Our daughter is three, but is on her fourth case manager. My typical child has one doctor, who has never yelled at me, never brushed aside my concerns, and never failed to return my calls.

I'm a high-school teacher. As we prepared for the new school year, my colleagues and I discussed how to best meet the needs of our students and their families. We talked about being our best in our most challenging situations. Our administrators encouraged us to come to them with our problems so that we could work together to solve them.

This quote from Colin Powell was shared: “The day soldiers stop bringing you their problems is the day you have stopped leading them. They have either lost confidence that you can help or concluded you do not care.”

These words speak to where I sit now with our medical professionals. I hesitate to ask for help because I’ve become more disillusioned with each failure. Our professionals don't work together to solve problems and give conflicting information. And because actions speak louder than words, increasingly I’m convinced that the bigger problem is that they don't care.


Is there a way to look for another specialist or other specialists who might be more helpful? I've come across only a few bad specialists when it comes to my son's care, thankfully. But the parents of the little girl I work with were told when she was born that her eye was inoperable and she would most likely die if operated on. The doctor asked in a snide way "is that what you want?" and told them that their daughter was hopeless and they should just give up on her.

Her parents instead found a way to take her another province and have a different doctor see her and perform the surgery (safely I might add) and they fought to get her another specialist within the city we live as well. I know this isn't always possible, as at the time when she was born the doctor she got was the only pediatric opthalmologist in the city which is why they had to go out of province. A new one showed up just before my son was born, and they fought to get him instead of the one they had.

If there's any way to get someone else on your child's team instead of these people, that might be your best bet. We have some truly wonderful specialists working with our son, I only wish all doctors could be so understanding so other parents wouldn't have to go through these kinds of nightmares when it comes to their child's care.

So heartbreaking to hear and yet I can relate, I don't feel my son's therapists work together at all. I have actually written letters to two doctors who have seen my son and misdiagnosed him, I have to say it helped me a lot. Feeling like people don't care is the worst, it's very depressing.

Your story is heartbreaking and entirely plausible for many other parents.

Not knowing if you are in Canada or the US makes it difficult to make a meaningful suggestion.

A most dramatic option would be to consider moving your family to another city to get a fresh medical start. Barbara

So sorry for your experiences, it's heartbreaking to feel the doctors are not helping or caring I can't image. Keep advocating don't give up. My daughters 5 and hospital visits and test have slowed as time goes on .. i hope that will be the case for your daughter too. It will get easier.

I could never have imaged this life either before my daughter was born. I had no idea.

This is so sad. Having worked as an advocate for families with children in the state mental health system, I can only hope that your state (or province or county) has a health ombudsperson whose job it is to help advocate for families. If there is, they would be more than happy to get this information and help you navigate the system, talking to doctors about their responses and efficacy without sanctions, and coordinating meetings between your family and the professionals involved. I can only hope that these doctors would be open to that and, if they aren't, then you have every right to demand health care workers who are. You and your child deserve more. Good luck!

You have made me cry. I am an NICU nurse and a mom of a child with autism, and I have the unfortunate position of seeing both sides. I cannot give you any reason, even remotely plausable, for the poor communication and care you have received. All I can say is that I became a much better, more compassionate and understanding nurse after I had my son. I know what it is to grieve, to be scared, frustrated and overwhelmed with getting what your child needs... no one could have ever explained it to be in my pre-child life. Ever. I have had my own run ins with teachers, speech therapists, doctors, and the like who seem to be unable to listen to the parent.... and when I can, i kick them to the curb. But it sucks when that is not possible.

Good luck... may you find those who "get it" and can support you the way you deserve...

Oh, I know this feeling all too well. We have two special needs children and we have been through the wringer with so many specialists and therapists - we've seen too much. Just a suggestion - is it possible to change your daughter's g-tube while she's asleep? I used to do this with my son and it worked like a charm. Before we'd head for bed I made sure I had all my supplies laid out and ready to go in the bathroom in the next room. Once he fell asleep I'd give him about 5 minutes or so to get into a real deep sleep, then change the g-tube. It was done in just a minute or two and he didn't even know about it. I'm not sure if you live in Canada or the US, but here in the US the doctors have you do the g-tube changes yourself at home. You order the replacement g-tube from your medical supply company. I guess I should say also that we were using the Mic-key button. Best of luck...I hope you're able to find some better solutions with your doctors!

When my son was born I put my trust in the doctors that were assigned to us but I always now ask for a second opinion. I have even taken my son to the states for a second opinion. I remember asking for a team meeting so that all the services could come together to make some decisions about his care. I felt that I had had my head patted and that I was made to feel I knew nothing. What helped me was joining a parent group of children with the same diagnosis. We swap ideas and doctor stories and have someone to bounce ideas off. My son is now 11 and we visit families with new borns of the same diagnosis to say "hang in there". We were lucky to escape the G-tube my son responded to the haberman feeder. Keep asking for the discussion about what to do for your child. And then Keep asking until something happens!