Field Manual: Second Opinions & Changes of Venue and Safe Harbors

Second Opinions & Changes of Venue

First let me say in full disclosure that I’ve never sought a change of venue for Liam in 2013, more than a year after Heart Warriors was published we brought Liam to the world’s first single ventricle survivorship clinic in Philadelphia. I’ve never asked for a second opinion, but I would if I thought it necessary. I have changed doctors and hospitals by switching from PSL’s program to The Children’s Hospital when we returned from LA.

I also have the benefit of having my child treated by three different practices, meeting doctors at dozens of practices throughout the US from my advocacy work, and talking to parents who use even more hospitals and doctors through the same efforts. If I didn’t know what I know, I would likely have sought a second opinion on many occasions, and I’ve not ruled it out for the future by any stretch.

What I learned about the differences in programs came from the beginning. Jim and I learned and discussed how the Denver program was a fledgling hope in 2003, compared to the intense training and experience of the cracker-jack CTICU staff at CHLA. Yes, Dr. Lacour-Gayet performed many successful DKS and traditional Norwoods in his time in Europe, but the nurses in Denver had not attended to such precarious patients. They were all still ramping up when Liam was at CHLA. Before Lacour-Gayet, the most complicated babies either got wait-listed for transplant (Dr. Dooms M.O.), or they got sent to Los Angeles or Children’s of Philadelphia. HLHS babies frequently went to Dr. Starnes from Denver if transplant matches would run too long.

So the novelty of Denver’s program was one valid reason, of which I was completely oblivious at the time, for me to be glad that we went to CHLA. The second benefit of being at CHLA was that it gave me a glimpse of what Denver could become, what to expect and demand from the CICU (Cardiac Intensive Care Unit) staff there. It taught me things that made me a better Heart Mom for Liam and in time a better leader for other Heart Moms.

I do worry that our family still feels guilty they weren’t there when they imagine Jim and me in that honeycomb bleak maze of a waiting room during Liam’s first major dance with death. They shouldn’t feel any guilt, at least not for me. I’m glad it was only me and Jim. I’m glad I didn’t have to baby-sit anyone else, answer their questions, smile to alleviate their pain, or feel the weight of their worry. Instead, I was alone in LA with Jim, the person I feel the most at home with. I only held my fear in a little ball until I could hold my child again. In LA, I didn’t sing or dance for anyone else.

I imagine Jim feels the same way, but we don’t talk too much about that day, though I’m sure we both remember it vividly. It was the first time we offered our child back to God and waited for the verdict. The lessons here are that if you take your child a few blocks or a thousand miles for the best possible care, you’re doing what is necessary. It’s not an inconvenience if it saves your child’s life. And while you’re on this pilgrimage of survival, you are not beholden to take care of anyone else. If you need the emotional support and distraction of an entourage, then have one. If you’re a solitary creature, then be one. Do what you need to do to get through what will be the hardest days of your life. I don’t want YOU, fellow Heart Moms and Dads, to learn what I learned through domestic air travel a thousand miles from home.

That said, if you interview your closest surgeon and determine that your child’s odds are 5% better a thousand miles away, then by all means make that flight. Dozens of Internet services and the Better Business Bureau exist so you can interview three contractors before you accept a bid for repairs on your home. We’re talking about your child’s life. I’m going to give you the short list of questions to ask if your baby is diagnosed that I didn’t know to ask when Liam was first diagnosed.   While Question 1-3 are very specific to hypoplastic right, 4-7 are appropriate for any heart defect.

  1. Is there any transposition of the great vessels or narrowing of the aorta, aortic arch or pulmonary artery? This is very important because this complication changes your first surgical stage dramatically. If they tell you no, then YAY! Odds are in your favor for lower risk during the first surgery. If they say yes, this means you want one of the BEST hospitals in the nation for your baby.
  2. Which valve is affected and is it stenotic or is it full blown atresia? Stenosis of the pulmonary artery may indicate more options than any other diagnosis. Atresia of the pulmonary artery may also leave some doors open. Stenosis of the tricuspid valve may limit your options, and tricuspid atresia (unless other weird things are going on) pretty much means you’re on a Fontan path as of 2011. Let’s just say that we’ve come a LONG way in the years since I was diagnosed at 23 weeks, and if it’s Pulmonary Stenosis or Pulmonary Atresia, get thy records to to another hospital for a consultation about biventricular repair BEFORE you head down the Fontan path. It may be that the Fontan is unavoidable for you, but for the first time in history it might not be, so don’t waste the opportunity to find out because you’re shy about getting a second opinion.
  3. Once you get answers to one and two, ask about the hospital, the surgery they’re recommending (depending on dx expect one of these:A) Norwood/DKS B) BT Shunt C) Pulmonary Artery Banding D) Cath procedure valvoplasty or septostomy or both depending. D. is not open heart surgery, but it is not without significant risks on a newborn – but less risky than A, B, or C in most good facilities. E) Very rarely, in utero procedures may be an option. This is very rare and has mixed results,  and if you want to know more you should ask your pediatric cardiologist about it.
  4. After the doctors tell you what type of surgery to expect, ask how many of those they do each year, what their statistics are, how that compares to other leading hospitals,and if there is another hospital in your state that has a better success rate. Don’t be shy or embarrassed to ask. These are totally appropriate questions and I tell you this – if you’re asking this out of the gate they’ll know you mean business.
  5. Ask what makes your baby similar or different from other case, any concerns that set your baby apart from other cases. You want to know your child’s details as best as they can determine them.
  6. Ask when they will want to see you again and what they’ll be looking for at that time.
  7. Ask about delivery nearby and transportation to the facility after you give birth. More and more hospitals are letting the moms deliver on site, but not all. It doesn’t hurt to ask and ask if they have fetal diagnosis navigator or coordinator – this is a newer thing but it’s a growing trend and good for you. You might meet this person first if they have one.

Safe Harbors

Note:  Review all information with your pediatric cardiologist before making medical decisions. With complex Congenital Heart Defects, there are absolutely no guarantees. Children still die every day around the world even at the very best hospitals, but fewer of them die and more and more of them thrive each year. To increase your child’s odds you want to get the best possible care with the lowest risk by going to the best possible facility.   If you are fortunate enough that your child is diagnosed while you’re still pregnant (I know you don’t feel fortunate because it happened to me, but we are), you have time to find the absolute best hospital. The best hospitals will typically:

  • Be affiliated with an outstanding medical school. Harvard/Boston, USC/CHLA, Baylor/Texas Children’s, CU/Denver, etc.
  • Invest the money to train and operate a Pediatric CARDIAC Intensive Care Unit. Why?
    • Because they invest in their staff’s education and professional development focused on a specialty for all who will treat your child.
    • They aren’t doing cardiology “on the side” and keeping the kids with heart surgery in the same space as kids with cancer or brain injuries – different needs, different expertise. If I was the mother of a child with brain injury, I wouldn’t want my nurse trying to figure out the next kid’s over heart problems either. Alignment of skills is CRITICAL in critical care.
    • They are more likely to have support staff (child life and social workers) who can help you with your specific needs.
  • Explain the surgery options to you patiently and in detail and make resources available to you for follow up questions.
  • Have many families that come from other towns, states, and even foreign countries seeking their expertise. I can’t stress this enough, unless you live in a major metropolitan area, you will likely need to travel to find a hospital that can treat your child.
  • Do a high volume of the procedure your child requires. So, a hospital that does five Norwoods per year is far less likely to produce the results of a hospital that does 20 Norwoods per year. Why?
    • Because the nurses have been there and done that and will know what to watch for and be the most responsive.
    • The surgeon and his team will typically get your baby off of bypass faster and be better prepared to deal with the equipment and complexity of the surgery.
    • They know what good and bad recovery looks like and how to respond to your child’s needs.

Disclaimer:  Am I saying all cardiac programs with low volume and no CICU are bad choices? No, I’m simply saying that you may have better choices. I will concede there are some old, established, and excellent programs that lack a dedicated CICU, but they are rare. I don’t judge any parent’s decisions, I just pray that they make informed choices.   For more information and a stronger education, please see Dr. Redmond Burke’s website for surgical outcomes:

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