July 22nd, 2011
07:09 AM ET

'Darth Vader's' mom: We focus on today

Editor's note: There’s something you might not know about the star of the year’s biggest television ad from the Super Bowl. Max is only 6 years old and he’s already had eight surgeries for his heart condition. This weekend, he gives Dr. Sanjay Gupta an inside look into his life and explains what he’s doing to help other sick kids. Watch "Sanjay Gupta M.D." at 7:30 a.m. Saturday and Sunday.

In this post,  Jennifer Page shares what being Max's mom has taught her. 

“Kiss your baby. He has to go to the NICU. We have found structural damage to his heart,” said the neonatologist. In a split second, life changed forever.

As they pulled him from my arms I sobbed, “I love you, Max,” over and over. My tears covered his sweet face. A new mom with a baby I couldn’t hold, a baby I couldn’t protect.

I remember my first visit to the NICU to reunite with Max. He was so small, lying in a scary-looking bed. Wires everywhere and a piercingly loud machine beeping. As the discussion swirled around his head about what was wrong with him, I bent to his ear and kept calling him “my perfect son."

He was mine and he was perfect. Somehow we were going to figure this out.

Max was diagnosed with a congenital heart defect called Tetralogy of Fallot. At 3 months old he had his first life-saving heart surgery. A week later he had a pacemaker implanted. When he was 7 months old, we found out he had several spleens and required surgery for a malrotation of his intestines.

The first year of Max’s life was full of surprises. Medically, it seemed that one doctor visit led to two more referrals and four more appointments. He endured more painful tests, procedures and surgeries than I knew was possible. The surprises were relentless.

In turn, I put up emotional walls and felt numb most of the time, afraid it would hurt too much if I let my guard down.

But not Max! He was vibrant and strong. He knew from birth his role was to fight. He cried to get the nurses' attention, then warmed their hearts with his big blue eyes and soft hands.

Somehow, in all that he endured that first year, he never seemed like a sick baby. Alarms beeping every two hours for medicine reminders, chalkboard symptom charts and reams of insurance papers made it seem otherwise.

Focus was Max’s biggest lesson for me the first year. Focus on the task at hand. Focus on the moment instead of the past trauma or future fears. Focus on appreciating the miracle milestones that we routinely take for granted.

Focus on love. I love to listen to his sweet voice float through the air. I love the way he mumbles in his sleep. I love the way he stares into my eyes. I love that we hold hands when we are scared. I love the way the doctors mend him. I love that it is my job to heal him with love.

Focus on today. We have Max - today. He is here right now to be nurtured and enriched. He is here to be challenged and loved. He is here to laugh and sing. He is here to play golf with his family and climb in the park. He is here today and I know I am one of the lucky ones. I get to raise my perfect son.

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Watch Sanjay Gupta MD Saturday at 4:30pm and Sunday at 7:30am ET. For the latest from Sanjay Gupta MD click here.

soundoff (194 Responses)
  1. Charles

    Thank you, modern medical science.

    July 22, 2011 at 07:57 | Report abuse | Reply
    • charles f williamson

      position in a secure deficit of accuracy.

      July 22, 2011 at 11:36 | Report abuse |
    • Jon O

      Ditto, thank you Doctors and Scientists.

      July 22, 2011 at 13:56 | Report abuse |
    • Joe

      I am so proud of my son HE is so strong in the dark side! Now use that dark force to cook breakfast and warm my coffee and while your at kill my boss.

      July 22, 2011 at 22:26 | Report abuse |
    • Veronica

      My baby was in the NICU... I could hold her after 2 weeks and a half because she was connected to an ECMO machine.
      I learned what focus mean... I learned the meaning of "this moment in my life"... l realized that in this country health care is your duty, not your right...

      July 22, 2011 at 22:45 | Report abuse |
    • Lisa

      Great story but you made it seem that very few hospitals can address TOF, which is not true. I worked on the open heart team at Johns Hopkins, and performed daily procedures on small infants and children with terrific outcomes. There are many centers in the US that can offer care to a child born with a heart anomaly.
      Health Care is a huge topic...from preventative to major interventions and lastly when not to intervene. Americans have to come to terms with mortality before we can tackle the system. American families don't seem to discuss death...so when decision need to be made they are unprepared...and want every thing done to no avail..death shouldn't be kept in the closet. Lisa

      July 24, 2011 at 08:48 | Report abuse |
    • teresa


      October 17, 2011 at 22:17 | Report abuse |
  2. Pam Thompson

    Thanks for sharing this great story on how medicaid works for "little Darth Vader" and over 30 million children in the US....great educational piece to show people where this money goes.

    July 22, 2011 at 08:06 | Report abuse | Reply
    • linda

      Where did it say anywhere in this article that medicaid was used?

      July 22, 2011 at 09:33 | Report abuse |
    • Jrod

      @Linda....watch the video and you'll see the lengthy discussion about Medicaid

      July 22, 2011 at 10:07 | Report abuse |
    • Al

      No kidding, this article isn't about medicaid...

      July 22, 2011 at 10:09 | Report abuse |
    • Adam

      Pam is correct, they talk about the cost of his care and how the families private insurace is expensive. Then they discuss how in the declining economy how Medicade is at risk starting at about 3:47 on the video.

      July 22, 2011 at 11:29 | Report abuse |
    • T

      Max is a child actor who has a recurring role on the Young and the Restless soap opera. The mom said the family is privately insured and their monthly insurance costs more than their mortgage and car payments combined. This family isn't on Medicaid but are trying to help those that are or could be some day.

      July 22, 2011 at 11:41 | Report abuse |
    • Dad of 2

      Pam – while the report does tlak about medicaide his family, fortunately has private insurance, the cost them more than their mortage payment. Either way we all have got to ensure that these hospitals stay open and that these innocnet children are covered for their helath care. I cannot imagine how many babys and children would not be with us to day without them.

      Max "Darth" give it to congress and may the FORCE be with you!

      July 22, 2011 at 12:26 | Report abuse |
    • John

      @linda-with-a-little-l: See that big video frame at the top of the article? Well, watch that video and you will see where Medicaid is mentioned. Now, aren't you embarrassed?

      July 22, 2011 at 12:30 | Report abuse |
    • linda

      Thank you to those who were not being a jerk about my response. I'm at lunch at work and video is blocked, so to the smart*ss no I don't see that heading you are talking about.

      July 22, 2011 at 12:55 | Report abuse |
    • linda

      p.s. and I am not embarrassed.

      July 22, 2011 at 12:57 | Report abuse |
    • dukefan3417

      Wow John! Such a tool....

      July 22, 2011 at 13:54 | Report abuse |
    • Daniel

      Was surprised to hear medicaid mentioned here, but I could not watch the video, so that explains it... Here's the thing, I am conservative, I hate my hard earned money being forcibly taken and given to everyone else... Perhaps if I was the one in need I would feel different about it. That being said, I voluntarily donate thousands each year to places like st.judes and make a wish, because I believe it's our duty to help our brothers and sisters in need, no I am not religious, yes I realize that this contradicts my statement above lol. Either way, it is important to state now that if these services do go away, it's up to each of us who are able to help others out. It's the humane thing to do, it's the right thing to do and extra vigilance must be maintained

      July 22, 2011 at 14:00 | Report abuse |
    • ELF

      to others who are questioning "where is medicaid mentioned in the article?"; the answer: The video mentions that millions of U.S. Children rely on Medicaid . N/A in the case of this story, but, applies to others. But i am confused to see people debating the need for Medicaid/Medicare/Social Security/Funding Education & Research. What else should we be funding? if these are not worthy of being funded, then what is? In the end, it is money spent "in-house". From US, to US. WE ALL benefit, and advance. Where else can we get such a profitable return on a $100 monthly investment? Gosh. Most of us pay into that less than what we pay for our phone service.

      July 22, 2011 at 15:01 | Report abuse |
    • ELF

      Daniel, you get what you pay for. Would you allow someone to live in your house their entire life and not pay for anything? How can we be allowed to live in USA and not feel that it is our obligation to pay into the system? I have seen and lived under other rules and governments, and i tell you from experience, you get what you pay for. Pay not, and this great country of ours will fail like most others. It is great to be conservative, but what does that have to do with being cheap. Conservative politicians receive great benefits, (just like Liberal Politicians). Yet they run around blasting the government, pretending to want to shrink the government (yet they stay employed to 30 years and rack up a huge pension). Why don't they fire all their aids? it is not realistic. We are all conservative when it comes to waste. That should be the point. But when spent wisely, what's the problem? Just because you don't need these services doesn't mean you are not benefitting from their existance. Imagine if they did not exist, we'd be like the street of any other 3rd world country. Just because you donate to St Jude's a $1 at CVS does not mean you can donate to the thousands and thousands of charities in need. It is just not realistic. Conservativism is great when it controls abuses in spending.

      July 22, 2011 at 15:20 | Report abuse |
    • RJ

      Pam – I can't believe you?! You don't want to give sick/dying kids medical help!? Money hungry $%&&.. I would give a kid medical insurance any given day rather than paving the street or fixing a pothole so your hummer doesn't lose its smooth(yea right) ride. Next time you have an opinion Pam, don't share it.

      July 23, 2011 at 11:43 | Report abuse |
    • achance

      no where here did it say or did it state in the video he was on medicaid. It said other children had to be on it because it is so expensive. They have their own private insurance that cost more then the mortgage on their house and car is what it . Not that it should matter. Any child is worth the payment especially if it is your child. I am glad he has proved them wrong. Hope you and your family have long life and health so your heartlessness doesn't come through to infect even more people. I guess your life is worth so much more then his eh? Because you happen to be lucky and born healthy. I think it was an awesome story. And I hope that he lives to bring joy to others for many more years to come.

      July 23, 2011 at 17:48 | Report abuse |
  3. Joy

    Thank you for a warm uplifting story of a precious child overcoming medical difficulties as told by a loving mother. It's refreshing and inspiring – and is so much better than reading about what is happening in the world of politics and entertainment. More stories like this would certainly make the day much easier to face!! Kudos to the editors!!

    July 22, 2011 at 08:46 | Report abuse | Reply
    • Macc63

      I'm with you there Joy. This was a very nice story about real people who mean something; not a political piece showing us another example of corruption and vice. Nor some peice about one of our over paid entertainers that think they are above the law. Just real people struggling to survive; an example of the power of a mother's love. Inspiring.

      July 22, 2011 at 11:20 | Report abuse |
    • Nancy


      July 22, 2011 at 12:43 | Report abuse |
  4. Josh

    CNN already did a story on this a few months ago.

    July 22, 2011 at 09:12 | Report abuse | Reply
    • lbradey

      and is there a reason it can't be repeated? it can only help to be reminded every once in awhile how precious life is.

      July 22, 2011 at 10:01 | Report abuse |
    • Gells

      Josh – You're voted off this island. Now leave. No need for your kind here.

      July 22, 2011 at 11:34 | Report abuse |
    • Lee S

      Oh is that a reference to "survivor" Oh you are so clever and Oh, thats so original Im going to have to tell everyone I know about the wittiest thing I read all day. /end sarcasm.

      July 22, 2011 at 12:10 | Report abuse |
    • Jan

      @Lee S: you write quite well for a ten-year-old. I'll bet mommy is proud that you know a big word like sarcasm.

      July 22, 2011 at 12:33 | Report abuse |
    • KlausVos

      You guys do realize that you are arguing like chidren over a simple statement of fact without commentary.
      He never said it was bad or stupid so just shut up.

      July 22, 2011 at 15:23 | Report abuse |
  5. amanda79

    Wow, I had no ided little Max from Y&R had a heart condition. It's good to see he's well and helping others 🙂

    July 22, 2011 at 11:13 | Report abuse | Reply
  6. charles f williamson

    better health is better life.

    July 22, 2011 at 11:20 | Report abuse | Reply
  7. MrE

    This nice patient story is also about lack of government support for children – the future workers, taxpayers, teachers, engineers, doctors, etc. for our nation. Residency and fellowship training for most doctors (adult) is primarily paid through Medicare. Hospital caring for Medicare patients (not Medicaid) receive an additional portion to help provide clinical training to physicians on their way to becoming internists, adult cardiologists, adult neurologists, adult ED docs, and so on. About half of general pediatricians and most pediatric specialists (peds ED docs, peds cardiologists, peds surgeons) are trained in the small number of children's hospitals. These hospitals receive no Medicare funding and thus no funding for physician training. These hospitals also provide a disproportionate share of Medicaid care to children. Training funding has been erratically provided in recent years through a special funding mechanism that is to be eliminated in current budget discussions. The elimination is in both Dem and Repub plans – so, don't blame one party.

    This plan is essentially: We need to cut funding, we can cut funding for children as they don't vote.

    In long-term economics, cutting pediattric funding does not make sense as: 1) adult providers caring for general cost more with poorer outcomes, and 2) most children cared for by pediatric specialists will have the ability to live productive lives and actually pay back into the economic pool more than they received. You can't say the same of Medicare.

    Want to invest in the future of our nation? Invest in Max and the pediatric care providers caring for him.

    July 22, 2011 at 11:25 | Report abuse | Reply
  8. charles f williamson

    we will concern more economic reform such as products in the care as well as the patients.more concern in the reform.

    July 22, 2011 at 11:35 | Report abuse | Reply
  9. mom2cma4

    My perfect son was not Darth Vader, but our little Smurf. When asked what was wrong with him, I never could say he had a birth "defect" because I don't believe that God makes mistakes"...we are all wonderfully made for His purpose.
    After having 3 perfectly healthy children I was shocked to have my 4th born with Tetralogy of Fallot. Without faith and a relationship with God I wouldn't have made it through. He

    July 22, 2011 at 11:36 | Report abuse | Reply
    • kyle

      So nice of your god to spare your child, too bad 60% of conceptions are aborted by god before doctors ever get near them.

      July 23, 2011 at 12:34 | Report abuse |
  10. David55

    If you apply the word perfect to things that aren't perfect, what are you really saying?

    July 22, 2011 at 11:38 | Report abuse | Reply
    • Chris, Austin

      Human perfect, that's what you're saying. You're saying your child is perfect to you, perfect in your heart, and you don't consider them to be broken because they were born with some additional challenges. With everything else children like this have to face, they don't need to be hearing from their own parents, "You're broken, you're messed up, you're flawed." They'll hear enough of that in life from people like you, David, people with a completely different kind of defect. That's okay – to us, you're perfect. Human perfect, but still.

      July 22, 2011 at 12:31 | Report abuse |
    • Mommy Robyn

      Dude, you're a dick.

      July 22, 2011 at 13:40 | Report abuse |
  11. S

    What a cute, sweet boy. May God bless him & his family

    July 22, 2011 at 11:45 | Report abuse | Reply
    • Sean

      Yea but he didn’t.

      Thank you doctors and science.

      July 22, 2011 at 12:07 | Report abuse |
    • Dad of 2

      Sean – God also provided the doctors with the knowledge, will power, love, compassion, etc. that the Doctors, Nurses, Techs, and others that cared for Max and countless children like him. So, yes God did bless him, maybe God choose Max to have this condition, have it repaired, and be the ONE that people see and realize what HE has provided us. Maybe, Max is doing God's WILL, no one but God knows. Just be happy for him and others like him that are alive today because of the "miracles" of modern medicine.

      July 22, 2011 at 12:33 | Report abuse |
    • John

      So, Dad of 2, God also chose to have the millions of starving orphans in Africa suffering from AIDS, malaria, and all the other blessed horrors of God's creation? What's the "purpose" of all that?

      July 22, 2011 at 12:37 | Report abuse |
    • Zeke2112

      "God also provided the doctors with the knowledge, will power, love, compassion, etc. that the Doctors, Nurses, Techs, and others that cared for Max and countless children like him."

      How do you know it was God? Maybe it was Zeus? Maybe it was Opopoerhjajha, the omnipotent amoeba who visits a select few and chemically alters their brains to make them geniuses?

      Or maybe it was just human beings using their own hard work and acquired skill passed down through generations of research and teaching. Nah, that would be crazy.

      July 22, 2011 at 13:22 | Report abuse |
    • Shell

      Just because someone mentions that they're thankful and they believe it was a higher-power guiding the miracle does not give you the right to badger them about their faith and religion. Personally, I am not religious. But I also don't go and troll comments and deny the existence of a God and try to make that person feel stupid for believing the way they do. Let people thank their God for helping the child, and you can continue believing that it was purely science and medicine. Maybe having faith gives that person a way to deal with all the hardship in life.

      August 26, 2011 at 23:22 | Report abuse |
  12. mom2cma4

    He is almost 3 years old now and has been a living testimony to MANY. God created him with TOF for His purpose and uses our weaknesses to glorify Him. Although it has been 3 years, I couldn't help but tear up when reading this story. It seems like yesterday that I was in that situation AND was such a traumatic / stressful time. One I will never forget or wish on anyone. You just can't possibly understand until you go through it......AMAZING STORY....don't take life – ANY LIFE – for granted!

    July 22, 2011 at 11:45 | Report abuse | Reply
    • Sean

      Yes.. thank you jebus for giving this poor boy a life threatening condition. And for causing his family to endure extreme emotional and financial stress so people reading about them can feel better.

      July 22, 2011 at 12:11 | Report abuse |
    • Nancy

      I understand. It makes you appreciate life more knowning that our children have a condition that there is medical help for. There is surgeries to repair. Life is precious and I am thankful if there was a birth defect my daughter had to have.. at lease TOF can be repaired.

      July 22, 2011 at 12:47 | Report abuse |
    • Zeke2112

      What kind of sick deity creates lesser beings with horrific defects so that they can glorify him? Do you have any idea how sick and terrible that sounds?

      If that's the God of love, I want nothing to do with him.

      July 22, 2011 at 13:24 | Report abuse |
  13. Jared86

    John, you're a monster. Seriously, have a heart.

    July 22, 2011 at 11:49 | Report abuse | Reply
  14. Volhostess

    Jennifer – Thank you so much for sharing your story. My Maggie (now 2-1/2 y.o.) was taken from me at 11 hrs old. She was born with 2:1 AV block and Long QT Syndrome. Maggie had a pacemaker installed at 3 days old. Pretty overwhelming for your first baby, after a perfect, healthy, textbook pregnancy. Lots of Dr Appts, lots of medicines to remember, time, etc.
    Then Maggie had a cardiac arrest in my arms at 9:05 on a Sunday night at 6 months old. My husband performed CPR and Maggie was airlifted to Vanderbilt. Once stabilized, her pacemaker was replaced with a defibrillator. I know what you mean about the first year. It makes you realize what a blessing from God your child is. And it upsets you when you see other parents who take a perfectly healthy child for granted.
    Thank you for sharing Max's story.

    July 22, 2011 at 11:51 | Report abuse | Reply
  15. charles f williamson

    inspiration for michelle bachmann

    July 22, 2011 at 11:58 | Report abuse | Reply
  16. Richard

    What a great story. As a person living with repaired Tetrology of Fallot, I can sympathize. Kudos to Max's family for their care and thoughtfulness. A loving and supportive family (mine have always been there for me) combined with good medical care makes all the difference. With backing like that, he'll be able to meet life's challenges. He's already mastered the dark side of the force, so I have no doubt he'll do fine!

    July 22, 2011 at 11:59 | Report abuse | Reply
  17. Adelaine Saria

    I couldn't help but feel compelled to read on with your story when I saw it in my email. My daughter was born Christmas Day 2006 and we were told she had TOF as well but upon her heart scan after birth it was way more serious. We had to fly to another city for surgery so I flew on a plane the next day after giving birth as I didn't want to be far from her. She definitely put up a fight. She was needing a pacemaker put in but the day we were flying out to the same hospital she passed away. Although Anabelle isn't with us physically now she still showed us the power of the faith, strength and love. So happy to see Max enjoying life and his family. All the best!!!

    July 22, 2011 at 12:00 | Report abuse | Reply
  18. SRS

    I am 50 years old, and was born with Tetralogy of Fallot. I had two ToF operations, a shunt at age 3 years and heart surgery at age 6, the latter by Denton Cooley when the procedure was still relatively new. Other than lifelong asthma which is finally under control, and a few problems typical of being 50 (need to drop a few pounds, watching the cholestrerol, etc.), I have led a normal, productive life, married the love of my life, raised a family, and been able to serve my church, community, and country in many ways. It sounds like Max has more than ToF going on, but there is still hope of a long, great life for him. If he needs a role model, he can look to snowboarder Shaun White, who was also a ToF baby but is obviously doing pretty well these days.

    July 22, 2011 at 12:03 | Report abuse | Reply
    • Larry

      In 1967, I had my operation for Tetralogy of Fallot. I was told that i was the first one to surive the surgery at Riley Hospital in indiana. I was 5 years old. So many of the other kids died before they even had a chance for surgery. My father found a job that would pay for the operation. Living with TOF is a full time job with no days off. He is lucky and so am I.

      July 22, 2011 at 14:30 | Report abuse |
    • SRS

      Larry, I had my surgery done in Houston in 1967. I remember that there was a good chance I was not coming out of the operating room alive, so I feel very blessed with the life I have had. From reading the other posts here, it sounds like the surgeries have improved over the years, but the condition is still very difficult to overcome. All you parents of ToF babies out there are in my prayers, that you get the medical, financial, and family/friend support you need.

      July 22, 2011 at 14:56 | Report abuse |
    • Larry

      SRS when we had our operation it was still very experiermental, and i had to weigh 35 pounds, or so. I think most of the kids never made it when we was small. I take one med a day so you know how lucky i am. I walk each day and weight train. So i am trying ,i dont want another operation.

      July 22, 2011 at 16:48 | Report abuse |
  19. Lee S

    Too bad he still fell to the dark side...

    July 22, 2011 at 12:07 | Report abuse | Reply
    • Sean

      He works in mysterious ways…

      July 22, 2011 at 13:16 | Report abuse |
  20. SofGangsta

    May the Force be with you, young Max.

    July 22, 2011 at 12:16 | Report abuse | Reply
    • Nancy

      Awesome!!! 🙂

      July 22, 2011 at 12:41 | Report abuse |
  21. John

    Johns like you make me ashamed to share the same name.

    July 22, 2011 at 12:34 | Report abuse | Reply
  22. Nancy

    As a mom to a Tetrology of Fallot kid, this is a GREAT story to see. My daughter had open heart surgery at 10 weeks old, and is now a active 5 year old. She will need to follow a Cardiologist her whole life and she will need another open heart surgery down the road, as she has no pulmonary valve. What I find interesting is this Max is in acting.. as is my daughter. Maybe there is something about having to deal with hospitals and doctors so much that make some kids like to talk and are not afraid. My daughter loves people, loves going to her doctors, and will talk to anyone! (yes I know that is not always good. lol).

    Great TOF story and what happens in some families lives in these children’s hospitals. Thank you for reporting on this and bless all those tough heart kids out there!!

    July 22, 2011 at 12:41 | Report abuse | Reply
    • SRS

      Hang in there, Nancy, your daughter will be fine. ToF surgeries are much more refined than when I had mine 44 years ago, and I have lived a complication-free life, at least thus far. Sure, no one will ever mistake me for an Olympic athlete, but on the whole I have been very blessed. Your daughter will be too.

      July 22, 2011 at 12:56 | Report abuse |
  23. Cory

    that's sweet. the force is strong with this one.

    July 22, 2011 at 12:53 | Report abuse | Reply
  24. Joey

    My Wife and I are about to deliver a baby girl with a heart defect known as Tricuspid Artresia. She will require at least three surgeries that will be done at Childrens Hospital L.A. Max has become an inspiration to me and I want to thank him and his family for being so strong, talented, and charming. I really needed a 'pick-me-up' this morning and the video provided just that. Thank you Max and Dr. Gupta.

    July 22, 2011 at 12:57 | Report abuse | Reply
    • Richard

      Stay strong. It is such a wonderful gift to have caring parents. My parents have been there for me since I was born with TOF and throughout my entire life. That you care and love your daughter will make an enourmous difference in her life. I wish you, your wife and your daughter all the best (and happy lives)!

      July 22, 2011 at 13:41 | Report abuse |
    • Anup


      Stay strong, i am sure your and you wifes love and care will make your daughters life happy and healthy.

      July 22, 2011 at 14:18 | Report abuse |
  25. Arnel Pineda

    Kind of ironic: Darth Vader kills young Jedi's and Max is a little kid

    July 22, 2011 at 13:01 | Report abuse | Reply
  26. Paul Jones

    Insurance would be a fraction of that if the government didn't have thousands of regulations andddd didn't have regulations that benefited insurance agencies as well that drive prices up and FORCE everyone to have them. It is said that teach kids at such a young age that they need to rely on the government.

    Of course the head of the hospital is going to say that they need this funding but the truth is Childrens Hospitals are some of the most well funded hospitals in the entire world......

    July 22, 2011 at 13:06 | Report abuse | Reply
    • Mary Ann

      So because children's hospitals have been successful in fundraising (not all children's hospitals are St. Jude), the government doesn't have a responsibility to pay its share? Medicaid, a government program, reimburses these hospitals at about 50% of COST. What other "buyer" gets away with that kind of payment shortfall? And as for the cost of training future physicians, Medicare provides a payment to adult teaching hospitals to help cover the costs (which are significant). Children's hospitals don't take care of old folks (Medicare), but they train the pediatric workforce. The program that helps to cover these costs in children's hospitals was eliminated by the great Obama because he finds no value in investing in the future pediatric workforce. Should children's hospitals have to rely on philanthropy to cover those costs, too? What a crock.

      July 22, 2011 at 13:35 | Report abuse |
  27. Linda

    Thank you for sharing this. Having gone through health issues with my own daughter, I fully appreciate her philosophy of focusing on the moment. This way of thinking helps you to get through the slings and arrows that life throws at you.

    July 22, 2011 at 13:14 | Report abuse | Reply
  28. Jana Smith

    Great piece....He plays Reed Newman on "Young and the Restless"

    July 22, 2011 at 13:17 | Report abuse | Reply
  29. annamarie saarinen

    There are no words to describe how wonderful it is to see this story...on several fronts. 1) awareness for congenital heart defects – the SINGLE most prevalent of all birth defects, impacting 1 of every 100 babies. 2) Lack of quality care for young patients with serious health conditions. Yes, there are only 53 children's hospitals, but about 150 medical facilities – children's hospitals + academic health center or larger metropolitan health centers – that have pediatric cardiology on site. That still means babies are being born at the 97 percent of hospitals in this country that do NOT have pediatric specialty care. newborncoalition.org has been working on leveraging health technology to assist these patients, but these important specialists are critical. Without them, these children will die from conditions that CAN be managed, and in some cases cured. That's why the new focus on this great kid and his mom helping with DC testimony in support of NACHRI and children's hospital specialty training programs/funding. 3) This country is waiting – TODAY – for the U.S. Department of Health and Human Services to adopt a formal recommendation already made by its federal advisory committee to screen all newborns for Critical Congenital Heart Defects before discharge from the hospital. Max was diagnosed before birth (but just barely). One of the most prominent heart defects that can be detected with the help of pulse oximetry screening in the newborn nursery? Tetralogy of Fallot (TOF). Max's condition. Babies around the country being born in hospitals where these conditions are not seen very often will be helped, or saved, by early diagnosis. It's really just a simple vital sign check – non-invasive and about the cost of a diaper change. You can learn more about early detection of heart defects here: 1in100.org or at pulseoxadvocacy.com. Go Max! Annamarie Saarinen (mom of Eve – 2 years old, CHD survivor)

    July 22, 2011 at 13:20 | Report abuse | Reply
    • Mary Ann

      Bravo! And congratulations to the state of Maryland for taking a giant step forward toward mandating newborn screening for congenital heart disease!

      July 22, 2011 at 13:37 | Report abuse |
    • ChristineP2

      I wish they had mentioned that it is the #1 birth defect. Congenital Heart Defects affect more children than all childhood cancers combined, but there is not nearly the drive for aid. Thank you for adding this valuable information.
      Christine (Mom to a son with a CHD)

      July 22, 2011 at 13:51 | Report abuse |
    • annamarie saarinen

      The statement from the federal advisory committee recommended all newborns be screened for critical heart defects can be viewed here: http://www.hrsa.gov/heritabledisorderscommittee/correspondence/October15th2010letter.htm

      July 22, 2011 at 16:49 | Report abuse |
  30. Elizabeth

    Thank you Dr.G for sharing this touching story. Max you rock little man and may the "Force" be with when you take on Washington.
    Your baby girl, wife and you are in my prayers. It's reassuring that we have such incredibly talented and capable medical professional in our country that can provide the necessary care to our youngest citizens.

    July 22, 2011 at 13:29 | Report abuse | Reply
  31. Zeke2112

    Buried in this is another great story. 50 years ago Max would have died in infancy. Today he is a thriving little boy. What is the difference? Medical technology and lessons learned from years of evidence-based practice. It's a sad fact that we only look up to doctors and thank them when we get sick or have an ill child, while the NFL crybabies blather on about how many millions they will be making. It's another sad fact that we turn around and cry foul at insurance companies who foot the bills for expensive medical equipment and medicines that save lives – equipment and medicine that, according to the rabble, should be designed, manufactured, shipped, and maintained for free.

    Max's story is great, but should not be used as a springboard for an attack on insurance coverage. He has a very rare and very expensive condition. Insurance is itself a gamble; you're gambling on the hope that you won't get sick and that if you do, the cost to treat it is managed by the investments made in the policy. To mandate that insurance cover 100% of every condition doesn't make it insurance any more: it makes it a discount plan that cannot be funded by investment.

    July 22, 2011 at 13:32 | Report abuse | Reply
  32. HK

    Seems like a good kid. Way to go Max.

    July 22, 2011 at 13:42 | Report abuse | Reply
  33. Bob

    Ok, republicans, time to defend your views. Explain to me how we can possibly claim to have equal opportunity in this country unless we provide at least guaranteed health care for all children. If Max was born to a family that couldn't afford his health insurance would you say, "Too bad Max, sit there while I kick you to the curb." Is Max somehow supposed to be "self reliant" and pay for his own health care at age 6?

    July 22, 2011 at 13:50 | Report abuse | Reply
    • mcp123

      Yeah lets see a church or "faith based initiative" pick up the costs of this kids healthcare bill. Somehow... don't think its going to happen.

      July 23, 2011 at 09:07 | Report abuse |
    • Mary Ann

      Bob, why are you making this political? If you want to be political, at least be accurate. It's Obama that proposed the elimination of the program that trains physicians in children's hospitals. It's Obama and the Democrats who cut BILLIONS in supplemental Medicaid payments to hospitals that treat a high volume of Medicaid beneficiaries (e.g. children's hospitals). So don't go throwing the Republicans under the bus on this one.

      July 23, 2011 at 15:07 | Report abuse |
  34. Patricia

    What a great story! What a wonder young man! Great job mom and dad!!!

    July 22, 2011 at 14:21 | Report abuse | Reply
  35. M Stothers

    Very glad to see CNN doing a story like this, but find it unfortunate that Dr. Gupta made it sound like heart defects are very rare, when they occur in one out of every hundred births–40,000 children annually in the US. While not all of children born with CHDs have defects as serious as Max, half of them will need intervention and trained hospitals to care for them. Because there are not children's hospitals everywhere for all children, it is important that parents know the signs and symptoms of congenital heart defects. Based upon this story, parents will think their children are not risk. But that is simply not true. You can do everything right and still have a child born with a broken heart. I did. My daughter is 3. She was born with a very severe case of tetralogy of fallot. She has had 6 heart catheterizations and three major surgeries. She is 1 out of 100.

    July 22, 2011 at 14:43 | Report abuse | Reply
  36. Brian

    Hold on tight.

    Bless you.

    July 22, 2011 at 15:13 | Report abuse | Reply
  37. TConnoll

    I'm sure it's been said, but in case not...May the force be with you young man–and to all of those like you. Great story. (Loved the commercial too...)

    July 22, 2011 at 15:17 | Report abuse | Reply
  38. rhinowarrior

    That's so nice to hear, I had a son, Zachary born with Fallot and lasted to his surgery at 2 1\2 years old but just didn't make it after the surgery, poor little guy. I'm glad that your son is thriving, it's nice to know that we are doing better with these defects to the cardio-pulmanary systems.

    July 22, 2011 at 17:43 | Report abuse | Reply
    • Tom, Tom, the Piper's Son

      My deepest condolences, rhino. What a difficult road you've had to travel. I can't begin to imagine.

      July 22, 2011 at 21:04 | Report abuse |
  39. Marcus

    Dr. Sanjay Gupta is completely in the pockets of giant drug companies. Sorry I could only find this space to express this, but I've been watching for many years. He's become a CNN Rock Star, and it is a shame that people look to him as a legitimate physician/consultant. He has no interest in even considering alternative medical approaches; in fact, he has denounced these approaches as dangerous and life-threatening. This comment will NEVER see the light of day. Why are Americans so amazingly ignorant?

    July 22, 2011 at 23:56 | Report abuse | Reply
    • kyle

      You are an idiot. Alternative medicine for a congenital heart defect? Real scientists know that the difference between a herbal tea and a pill is the fact the herbal tea has 100 other chemicals in it that can have 100 other effects on the body and 1000 side effects. Some maybe good, some maybe bad, but the concept that because it is natural makes it better is COMPLETELY irrational. Doctors should quit treating people like you so this type of idiocy dies out.

      July 23, 2011 at 12:49 | Report abuse |
  40. Clyde M

    Max to Congress: "These are not the health care cuts you're looking for."
    Congress: "These are not the health care cuts we're looking for."

    That's how I imagine it goes anyway.

    July 23, 2011 at 20:20 | Report abuse | Reply
  41. Chrumbs

    Thats a good boy. I wish him the best of luck in life!!!!!

    July 24, 2011 at 00:05 | Report abuse | Reply
  42. Jen Duffy

    Max also portrays VIctor Newman's grandson on Young & The Restless, correct??

    July 24, 2011 at 07:34 | Report abuse | Reply
  43. Pam

    My son had Tetralogy of Fallot he was diagnosed at birth. He had open heart surgery when he was 6mosold. I was told that he would be on heart medication for the rest of his life. My son wouldn't be walking the earth if not for the hands of his surgeons and cardiac pediatrician at Yale New Haven Hospital. After the surgery my son was only on the medication fora couple of months and was closely monitored afterwards. I truly appreciate all the work and dedication that the staff at Yale administered to my child. I thank God everyday for walking these angels into our lives at that time. My son is 23yrs old and will be 24 four this year and believe me I still email his doctor that stood by my side to let him know how much I appreciate his dedication to the child and the gifts that gave him. Trust me that was not an easy time in my life watching my helpless baby fighting for his little life. PAINFUL that's all I can say. ONCE again THANKS Doc I LUV you with all my Heart and Soul. Keep Giving Back and Making Miracles.

    July 24, 2011 at 08:13 | Report abuse | Reply
    • Elaine

      Pam, I feel your pain. My sons have had a total of 7 open heart surgeries in 17 years to correct TOF. They are not on medication either. We are very blessed to have a wonderful pediatric cardiologist and cardiac surgeon at Shands at the the University of Florida.

      July 26, 2011 at 20:45 | Report abuse |
  44. Evan

    Max, may one of your major contributions to the world to show through Darth Vader that light and good can and must prevail against darkness and evil! You're an inspiration, Max!

    July 24, 2011 at 14:48 | Report abuse | Reply
  45. scott

    Yet another plane example of why health care is NOT just another consumer activity. And should not be dealt with like just another purchase. It is a life, your child's life, your wife's life, your husband's life, your life. To turn the care of a child into just another act of consumption, like buying a car, or a cheeseburger, is the ultimate in dehumanization and is a manifest evil.

    July 24, 2011 at 15:20 | Report abuse | Reply
  46. Solarsails

    "...may the schwartz be with you..."

    July 24, 2011 at 21:24 | Report abuse | Reply
  47. Elaine

    Thank you for this article. I have triplet boys with TOF and insurance is out of sight. They are now 17 and beginning to plan for the future. Because private insurance is so expensive, they have to keep in mind that when looking for a job, they need to find a company that offers group insurance. Without group insurance they would be giving their entire paycheck to the private insurance company. Once TOF is repaired, they continue to need followup care and valve replacements. Once again thanks for sharing this moving story.

    July 26, 2011 at 20:42 | Report abuse | Reply
  48. Michele

    I read this article and thought to myself "wow, I could have totally written this!" My daughter was born with a heart defect and we later found out a chromosomal disorder. I had all the testing that was give and was told that my chances of have a child with a birth defect was 1 in 6,100, so that goes to show you that no one really knows, do they? Just like Max, my daughter Riley is a fighter, she has endured 2 surgerys, several hospital stays and still maintains a fantastic disposition. I am not the most religious person but as I've seen in many of these posts that people thank either God or Science for saving these babies ... why does it have to be one or the other? As to Medicaid, after 9 long months of applying and getting denied, we were finally approved for the Deeming Waiver, which is part of the Medicaid system. It's a hard processes, but if you need it you just have to keep pushing through.

    This goes out to those people posting their engative comments – Shame on you. I pray that you never have to know what it's like to have your newborn child taken away to the NICU and not be able to see her for almost a full 24 hours. Then to have weeks (if not months) of days ferrying back & forth back to the hospital while trying to balance your regular life for the rest of your family. I pray that you never have to hear the beeping of the monitors that are constatly going off – a sound that will haunt you for the rest of your days. I pray that you never have to wear a hospital badge that announces you to the hospital as a parent of a cardiac patient. Did you know that there are less than 100 Pediatrica Cardithoraci Surgeons in the county? We are fortunate to live near an amazing Children's Hospital, but not everyone is so lucky. Maybe you negative people should think about the things you plan on sying (or typing as the case may be) before they come out of your mouth. You end up sounding horrible, especially to those of us who are living through an ordeal such as a sick shild.

    July 28, 2011 at 09:54 | Report abuse | Reply
  49. Carol

    The miracle of medicine and how far it has come. My daughter was born with TOF, but that was almost forty years ago, and then you waited and hoped the child would live o have surgery later. Please do not cut funding!!! Rock on Max!!!

    August 1, 2011 at 03:17 | Report abuse | Reply
  50. This is an old story

    CNN Necro-bumps old stories to the top when they have no content.

    August 15, 2011 at 10:02 | Report abuse | Reply
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Get a behind-the-scenes look at the latest stories from CNN Chief Medical Correspondent, Dr. Sanjay Gupta, Senior Medical Correspondent Elizabeth Cohen and the CNN Medical Unit producers. They'll share news and views on health and medical trends - info that will help you take better care of yourself and the people you love.