What I Need as a Fontan Parent: From Diagnosis to the Future

Fontan parent support

We were asked what we needed in the past, what we need now and what we need for the future as a Fontan parent.  Here is our response.

Upon diagnosis, I needed:

  • Medical professionals to understand that my brain entered fight-or-flight mode the second I heard something was wrong with my baby’s heart.  I needed you to know I could not take in most of what you were saying, and I needed someone to follow up with me after I got home and had a chance to digest the news.
  • To know the name of my son’s diagnosis and where to find as much reliable information as possible — don’t let me Google without giving directions.  The AHA booklet is great, but it is not enough. I needed the Mended Little HeartGuide to answer parent questions, too.
  • To know where my child had the best chance of survival, even if it was in a different city or state. Luckily, I found that information. But so many parents don’t have the resources to do so.
  • To understand the fetal stress test better and to be told that when the baby’s heart rate fluctuated, it did not mean he was going to die just because it got a lot slower.
  • To be connected, in-person and online, with other mothers with children with a similar heart defect who could answer my non-medical questions, so I didn’t feel so alone.
  • Mental health support from someone who truly understands moms of children with CHD.
  • To understand better that this is a lifelong disease, and while many children do very well, it is something that will always require specialized care.
  • To see that there could be a good life past age five and that the five-year survival statistic is just one of many mile markers.
  • To understand that it’s okay — even a good idea — to get a second opinion so I wouldn’t feel like I had to sneak around or feel guilty that my son’s doctor would think she wasn’t good enough.
  • To fully understand that some families end up in the hospital longer than the average recovery time.
  • To not hear negative things about my son’s “quality of life” as that means something vastly different to parents than it does to medical professionals, and it is not helpful.
  • To never have to put a feeding tube in my child myself as that remains one of the most traumatic things we had to do.
  • For the GI docs to put away their calculators and understand that my son vomited every time there were so many extra calories in his breastmilk or formula.  Feeding is hard enough without always feeling guilty.
  • To know that breastfeeding would not kill my child, but at the same time to understand that it was okay to stop breastfeeding if I could not.
  • To be part of the care team and not just on the sidelines.
  • To have hope.

Now, I need:

  • To know my child’s heart is not going to stop when it dips really low in the night. I have been reassured by my son’s fantastic medical team, but it still really scares me.
  • Better monitoring, not just interstage Norwood to Glenn, but also between Glenn and Fontan and Fontan monitoring too.
  • Connection to resources for the whole family, including support resources that will improve both the physical and mental health of the family.
  • A way to stop the liver damage that is occurring.
  • For everyone to understand that while it’s good to have my son start taking charge of his health and bringing him into the conversations, he still has nightmares about dying for months after most appointments.
  • To understand the medicines my child is taking and any possible long-term effects, including aspirin. I would like to see more information on anticoagulation in particular.
  • Help with my child’s educational needs. I need advice on how to manage the educational system with a child who is very smart, but who can get overwhelmed by the system.
  • To know what is developmentally “normal” for my son.
  • Help with my child’s social needs. I need someone to talk to my son, preferably a male teen or young adult with CHD who can answer questions he doesn’t want to ask mom or the doctors. I also need a group of CHD peers for my son.
  • Mental health care for the whole family.
  • Information about how to get my son more active in a world of video games and smartphones, but also in a world where many times he just can’t keep up with his peers in the sports he loves.
  • To know how to connect with an older Fontan patient who needs a cath, liver biopsy or other procedures and appointments.

In the future, I need:

  • A cure for single ventricle defects.
  • Dr. Rodefeld’s device to work.
  • To hear that three palliative surgeries are not the best we can do and to have a better answer.
  • For a quick solution, so it doesn’t feel like a race against the clock.
  • For more usable (age-appropriate, interactive and fun) resources to be available to my son as he transitions into adulthood. Mended Little Hearts is working on this with ACHA now, but it would be nice to have a list of what is out there for transitioning teens.
  • For all of us to stop using “surviving to adulthood” as our benchmark. We want our kids to live a full life.
  • For hospitals to work together and share information so that we can find answers faster. As soon as something proves to be helping, I need it to be shared. I understand this collaboration is happening more now, but it could be improved like in Cancer LinQ where medical professionals share real-time information about different protocols.
  • My son to be healthy, happy and not to be defined by his heart condition.

By Jodi Smith Lemacks & Julia Rowbotham

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