Thank you all so much for inviting me and inviting Jake to present his poster. It has been a real honour to be with all of you for the last few days. Although I have to admit that, despite the fact that I frequently speak to large groups of people, I am a little cowed by the fact that I am speaking to so many who are directly responsible for the great quality of life my son enjoys.

Jake was just 3 weeks old when we stepped foot into Boston Children's Hospital for the first time. I so remember breathing a sigh of relief as I saw the lobby – because after weeks of gray doctors’ offices and hospitals where, believe it or not, the electrocardiogram machines did not always work, it was clear we were now in a place focused on taking care of children. The doctors and nurses did just that. They took amazing care of our son, not just on that first visit, but when we came back at age 1 for a second surgery, at age 3.5 or 4 for catheterisation, and at age 5 for the third surgery. I got the same feeling when we went with Jake – it seems kind of odd to say you “took” a 17-year-old who is now a half foot taller than you – to the Children's National Medical Center last month where he had a catheterisation and got three stents and a Melody valve. He was very excited to visit the Medtronic kiosk here and learn more about his new equipment.

My job today is to speak not as a financial expert and certainly not as a medical one, but as a parent – to give you a sense of the challenges parents who have a child with congenital heart disease are facing; an appreciation for the ways all of you, but nurses in particular, are helping us with those challenges; and perhaps a few suggestions for ways we can help each other moving forward.

Okay, I said I was not here to talk about finance. But I am going to regress and start there, because having a child with congenital heart disease is costly, and particularly in this economy, that is a challenge.

Congenital heart disease is, as you know, the number one birth defect. Nearly one in every 100 babies is born with congenital heart disease, the reason there are now 2 million congenital heart disease survivors. When the Healthcare Cost and Utilization Project took a look at 35 different birth defects, it determined that the two most expensive were heart defects – hypoplastic left heart at $199,597 and truncus arteriosus at $192,781.

The costs, as you might expect, do not stop there. According to the National Health Policy Forum, special needs children – including those with congenital heart disease – make more than twice as many physician visits and seven times as many non-physician medical visits as other children. They have three times as many hospitalisations and spend about seven times as many days in hospitals. Their average prescription drug expenditures are nine times those of children without special needs.

In many cases, those expenditures are covered by private or employment-based insurance: 65% of children with special needs are covered by one of these two sources, another 22% are covered by Medicaid or other public insurance, 8% are covered by some combination of public and private, and 5% are uninsured.

Still, even when the insurance is in place, even when it is quite good, it does not ever cover everything.

It makes you understand why keeping that all-important health insurance in place has become a driving force behind parents of children with congenital heart disease, and why the health insurance debate that continues to this day in Washington seems more important to our population than to the population at large.

Fighting with health insurers takes up a great deal of time for many parents of children with congenital heart disease. When it came time for Jake's third surgery, I had switched jobs – leaving a very cushy health plan for an HMO (Health Maintenance Organization) with more limitations. According to my new HMO, Boston Children's – where Jake had had his previous surgeries – was out of our network. We were going to end up responsible for a huge chunk of those bills, so I went to work to try to figure out what it would take to get Jake's surgery approved as an in-network exception. I figured this was justified because I had been told that once a surgeon has operated on a particular patient they have a leg up when it comes to that patient's anatomy and they should – if possible – perform all surgeries in the future because it is likely to lead to better outcomes.

I needed to figure out who at the HMO I should talk to in order to communicate this information and get my waiver. The problem was that I could not get anyone on the phone. I started in what seemed like a logical fashion with the toll-free number on the back of my healthcare card. I spoke to representative after representative. I got nowhere and I got frustrated. Finally, I did something that as a member of the media I try never to do.

I picked up the phone and I called the office of the CEO of that HMO and I prayed that the person who answered his phone would be a Today Show watcher. She was, and this backdoor approach got me to the medical director of the HMO who explained the steps I needed to follow to try to make this happen.

It still was not easy, but Jake got the surgery he needed from the best doctor for him – and we paid an estimated $10,000 or $12,000 out of pocket – a lot of money, but fortunately we were in a position to swing it.

If I had not been successful in appealing to the HMO, I should say, Jake still would have gotten the surgery he needed from the best doctor for him. We might have had to take a second mortgage on the house, tap into our retirement accounts, or take out a personal loan. The amount of money this can cost – without insurance – represents 2 years’ salary for the average American family. There is a reason that health crises are the leading cause of bankruptcies in this country.

Obtaining the care our children need, the care that gives our children the best shot at full lives – this is what parents do, and not just parents of children with congenital heart disease, but parents of children with congenital heart disease do it more than most. Research shows that more than 20% of children with special needs have conditions that create financial problems for their families.

That is what happened in Laura's case.

Laura's younger daughter was born without one chamber of her heart. She got a diagnosis during the pregnancy, and 3 weeks later her husband told his boss. After their daughter was born, he was fired. The couple was able to get on Medicaid after the birth, but they ended up having to liquidate their retirement funds. Her husband was eventually hired by a car dealership and was offered health insurance benefits. They now pay $500 per month for this insurance, and financially they have yet to get their heads back above water. They have very little in emergency savings and nothing at all in retirement funds. Not too far ahead they are hoping for a breakthrough: They are working to get their daughter covered under a Medicaid Waiver because they earn too much to qualify for Medicaid.

Michelle's case was different still. Her son Anthony was born with double-outlet left ventricle and transposition of the great arteries. For her, life ever since has been “kind of a nightmare” – the kind that never lets up, financially and emotionally. Anthony's first hospital stay was between age 6 weeks and 8 weeks. His second was from age 6 months to 8 months. Despite good insurance, and the appropriate in-network referrals, the bills were endless. “I was fighting about money at least once a week. The bill would be for $600. The insurer would only cover $475. And every doctor had his own bill on his own piece of paper. It went on like that for years”.

These are two very different stories, but they have similarities. Both of these women planned to go back to work after maternity leave. Neither did. That is very common, particularly in cases where kids have surgery in the first few weeks. In fact, parents of 30% of children with special needs have either cut back on work or stopped working altogether. For a two-income family, the loss of that income at a time when incoming bills can be outrageous is particularly daunting. These days, with unemployment still way too high, the possibility that the second job could go makes a stressful scenario even more so.

Unfortunately, the resources to help families with congenital heart disease are not as substantial as you would expect for a problem that effects one baby born every 15 minutes. There are, notes Megan Van Pelt, founder of the Children's Heart Foundation, lots of little groups rather than one big voice that provides a go-to place for information. However, the picture has, thanks to that amazing connector of people called Internet, gotten better over the last few years, and thanks to nurses who point us in the right direction.

It is the nurses, who have taught me – and other parents I have spoken to– some of the most valuable lessons of all when it comes to being a parent of a child with congenital heart disease. Some of those lessons are small, but helpful. Some are much more profound. I thought I would share them with you this morning in the hope that you might be willing to pass them on.

1. 1. They taught me to keep a pencil and paper at the ready and to write my questions down. Medical visits these days are shorter than they used to be. Couple it with the fact that many families of kids with congenital heart disease try to forget there is anything wrong – we try to not think about the fact that we are dealing with heart disease – until a few days before each visit. That makes it very difficult to remember that a month earlier there were a couple of strange headaches or that appetite has been tapering off. Early on, a very wise nurse told me to keep a running list of notes and questions and to bring it each time I headed to the doctor's office.

2. 2. They taught me that siblings may need help too. When one child in the family is in crisis, the other's needs tend to slide. It was the nurses who encouraged us to bring Jake's younger sister to the hospital and made her feel welcome and comfortable rather than frightened. Again, a small thing but important in the healing of the family.

3. 3. They taught me that it is okay to be optimistic. Yes, as parents, we know we need a truthful, realistic assessment of the situation at hand – but, believe it or not, it can be helpful if you spin that truthful, realistic assessment as positively as you can without leading us astray. Nurses, more than doctors, have the ability to do that. My friend Dawn, whose son has had three surgeries in Miami, recalled that one nurse said to her – just a day or two after her son's first surgery – you know: “This is a floor of hope. Someday soon you're going to take your baby home”. That message carried her for days because, as parents, sometimes we are so focused on the minutia of the prognosis that we lose sign of the bigger picture. For me, like Dawn, the nurses helped bring it back.

4. 4. The nurses led me to the available resources. It may sound unbelievable to you – but I did not know of the existence of the Congenital Heart Information Network until Jake was 13 years old. I did not know of the Adult Congenital Heart Association. It is hugely helpful when you – or the social workers on your teams – point parents in the right direction as they leave the hospital, particularly stressing that Spencer's Fund, a part of the Congenital Heart Information Network, is available to help defray the costs of medication, travel, hospital parking, even gasoline. Tell parents if we join the Congenital Heart Information Network and get online – it is not expensive, but membership costs will be subsidised if necessary – we will find a network of people like us with kids of all ages with congenital heart disease who are feeling what we are feeling and can give us the sort of practical advice that doctors sometimes do not have the time to give – referrals to feeding programmes, information about early intervention, special education, and fighting the school systems to get what we need. C.H.I.N. (Congenital Heart Information Network) [https://tchin.org/] is not the only network. LittleHearts.org has a fabulous list of resources on its website. Kidswithheart.org has a terrific section of quotes from parents including gems like: Do you ever feel you have lost your mind just a little bit because you are always jumping to the worst conclusion? And, then there is Facebook, where in addition to its website, Children's Heart Foundation has formed a group that is going strong.

5. 5. However, I think the most important lesson of all we have learnt through this process – and again – it was taught to us by a very smart nurse, is that I am my child's first line of defence.

When Jake was 3 or so, he spent a few days in the Children's Hospital to have stents put in. He was pretty relaxed about the whole thing – far less nervous than his mom or dad – and was extremely patient with the parade of doctors, interns, and medical students constantly poking and prodding, listening to his murmur before and after, sometimes using the cold stethoscope that came to symbolise a rookie doctor, checking and rechecking his temperature, interrupting his naps. He just did not like the blood work. For some reason, there was a LOT of blood work – twice a day, morning and afternoon. I do not remember why and do not remember what they were checking. I just remember Jake did not like needles, and I remember Jake screaming. Loud. He was not shy. I remember joking that at least his lungs were fine.

After a few rounds of Jake's protests, and a few rounds of needles, I remember a man in a white coat telling us that they needed more blood. A doctor we had never seen before had apparently messed up in the morning, or maybe the intern we had never seen before had messed up in the afternoon, but now a resident that we had never seen before was telling us that he absolutely had to draw blood again that evening so that the chart that could be okayed by yet another doctor we probably would never see later that night and everyone could go home.

We said no.

The young resident had never heard of a parent saying no, but no one had explained why the blood was needed, and no one seemed to know why we could not skip it. Peter and I had stared at that Patients Bill of Rights every time we took the elevator, so we were pretty sure we could just say no.

The young doctor got frustrated, and baffled, and angry, and a little nasty. He argued. He scoffed. He raised his eyebrows. Then Peter raised his voice. Loud. Jake apparently inherited his lungs from dad.

We apologised, but said we would like to speak with someone else. Then there was more screaming, and we apologised again.

After the incident was over and Jake was stabilised, a nurse pulled us aside and told us that we never needed to apologise for protecting our child. She said we would always know our children better than anyone else, and that we would always be his best defence, his number one advocate. That, I have never forgotten.

As I mentioned a few minutes ago, after a 12-year break, Jake was recently in DC for three stents and a valve. We arrived at the hospital at 7:30 in the morning, met with a surgeon pre-operatively for 20 minutes, and then sat in a waiting room for about 5 hours. Everything went perfectly well. The surgeon was an ace. His surgical skills were trumped only by his people skills before the procedure and during his two recovery room follow-ups.

Jake was in the hospital for 30 hours. During that time – not to take anything away from the skill of the surgical team – it was a team of nurses that provided our round-the-clock care. Not just checking Jake's recovery, and his comfort, and making sure he had everything he could possibly need, but also checking on OUR recovery, and on OUR comfort, and making sure WE had everything we could possibly need. A nurse brought each of us extra pillows. A nurse brought Jake food, and then made sure mom and dad got food for ourselves. A nurse swiped an extra chocolate pudding. For Peter!

Our family has been lucky. Jake has had three open heart procedures and two stentings. His doctors, whom we had chosen, have all been excellent. His nurses, whom we were simply given, have been exceptional. When we tell stories of the care Jake has received, it is often the nurses who play the starring role.

I want you to know, I am grateful – very grateful – as are the other parents who I spoke with in gathering string for this conversation. Of course we appreciate our surgeons and our cardiologists, but in this forum that was established to honour nurses, I want you to know that we appreciate all that you do. Your devotion, your dedication, your hard work is so important. I am fully aware, as are so many of the other parents I have spoken to over the years, that you are miracle workers in every sense of the word. I am so grateful to have had my son at a time when you were able to perform one for me.