Patient Advocating

Nick and I have a huge desire to create a pamphlet for hospitals to give to parents who have children with high risk conditions and complex situations.

That's because, when we walked into the role of these parents of a very high risk medically complex child- we didn't know who to turn to or how to turn. We had thought all along that our advocates would be our doctors, but it turned out that WE were our main advocates. Over time, we found that there were other advocates available too, other options and many avenues to pursue... But when you are in a critical life and death situation, it's hard to research those avenues- nevertheless find someone to help you proceed in the direction that you want to go.

Our pamphlet wouldn't have to be completely chalked full of our own experiences, because that's not what we want. We are very aware that there are many MANY options to choose from when it comes to caring for a complex child... Compassionate care being one, and surgical intervention often being another- but there are so many choices thrown at you in such a little time and unless you build yourself a backbone instantly- you don't know that it's within your rights to speak up LOUDLY on behalf of your little one.

Compassionate Care doesn't mean giving up on your child- which was hard for us at first to realize. It's a choice that families seriously need to consider when it comes to prolonging the life of their child or allowing them to be at peace.

Compassionate Care means one of two things.

1. Taking your child home and making them as comfortable as you can while you spend as much time with them before their condition deteriorates and they pass away.

2. Taking them home might not be an option, so making them as comfortable as you can in the hospital while also allowing them to spend their last moments in the way that you as the parent want to see them spent.

It is not giving up, it's choosing quality time over quantity. It's definitely not a wrong decision when your child is born with a complex medical condition. There is no right or wrong here. Some parents do not want to put their child through surgeries and possible pain knowing that they have low odds of survival or poor quality of life.

I do not advocate strongly for this position, but at the same time, I completely understand the choice. There were times I had wished that we had chosen this in the beginning, watching Gabe be intubated and remain very ill and knowing I couldn't take him home and just love on him while we had him was very hard. He could have not survived his first surgery, and I would have wished we hadn't put him through it at all if we would have lost him. So in complete understanding of that position, I have no judgement towards parents who choose it.

The second route can be the most challenging and most draining choice, but it's in the hope and belief that fighting for your child's life is important to your family, despite what the odds or percentages say.

This is the route we obviously took for Gabe.

It comes with a lot of push back, especially if your child has Down Syndrome (in hospitals where they do not understand the quality of life for a child with Down Syndrome, especially  where there will be more resistance for treatment) or other chromosomal conditions.

The first thing you should know when choosing this route is that there is no point where it is not okay to change your mind. If you decide that your child has been through enough, that your family cannot endure more surgeries or more traveling- it is okay for you to choose compassionate care at any time. That is something you must know. It does not make you a bad parent to choose that for your child, and it can become an option at any point that your child is not doing well and the road does not look promising.

The second thing you should know is that there are people who will listen and advocate for you. Many major hospitals now have incorporated teams called PACT teams. Patient Advocate Care Teams. These people will not judge you. What they do (and often times there is a hospital pastor of some sort on the team) is get together with you and your family and get to know you- they get to know your child and they find out the wants/needs/hopes you have for your child. Then, at any time, you can call them into a conference with your doctor.

The PACT team will take notes of what the doctors say and they will ask questions on your behalf that you yourself may have forgotten to ask. They advocate from your perspective and they help unite yourself and your child's care team's thoughts. You can have these conferences as often as you need them.

PACT was INVALUABLE to us both in Seattle and in Boston. We didn't call on them in Boston until towards the end of our stay, but they helped Nick make the choices that he needed to make when it was apparent that Gabe was not going to get better. They do not push their beliefs on you, which is very important, but they will honestly fight with you for what you believe is best for your child.

PACT will help you talk to your doctors and push when your doctors don't seem to be understanding you and your child's needs. Every time we worked with PACT, we found ourselves more at ease with the care of our child and more understood with how we wanted him cared for.

I cannot stress enough, if PACT is available, ask for a meeting with them. Get to know them, and utilize them at every chance you can.

If PACT is not available, there are also social workers. It sounds scary the first time you hear the social worker wants to speak with you, but almost all of the time, they want to talk to you about your family and how you are doing. They will work with your insurance to help you find housing, they can help out with food expenses at times, and they often times will drop by a bag of snacks or goodies. They can help you get on state assistance programs, find housing (shared, even) and even help with transportation needs.

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