Every year, 100,000 babies don't make it to their first birthday because of CHD.
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Today we are highlighting a very special Heart Warrior for Heart Warrior of the Week: four-month old Henry Robert Rochon, born on October 27th, 2016.  His Mom’s pregnancy was completely healthy up until the 35-week mark where doctors discovered a suspicious looking shadow at a routine ultrasound.  Henry’s parents, Jenn and Joel were told they needed to visit the Women and Infants Diagnostic Center as a technicality, the whole time being assured they had nothing to worry about and that this happens all the time.  It was at this appointment where Henry was diagnosed with aortic valve stenosis, a severe mitral valve defect, an enlarged left atrium and an intact atrial septum. 

His condition was so severe that they were immediately transferred to Boston Children’s Hospital as that was the only facility equipped to keep Henry alive upon his arrival.  The last four weeks of the pregnancy were excruciating for Jenn and Joel as they were unsure what the future would hold for their little bundle of joy.

At just 18-minutes old, Henry was rushed into his first surgical procedure – a balloon valvuloplasty to open up his aortic valve and to create an opening in his aortic septum.  At seven days old he underwent an open-heart surgery – the Norwood procedure.  Although Henry doesn’t have HLHS, he was treated as if he did because doctors felt this was the best course to take until he was old enough to treat his mitral valve.  Unlike with HLHS patients, Henry has four working chambers, but until the valve is repaired or replaced, the doctors have reworked his heart to operate with a single ventricle.  His little body has also endured two catheter procedures, three days on ECMO and a gastrostomy-jejunostomy (GJ) tube placement surgery. 

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He is currently scheduled for his next open-heart surgery at six months old but his surgeons are still unsure if they will perform the next step in standard HLHS treatment – the Glen Procedure – or if they are going to address his mitral valve.  Henry is currently four and a half months old, and throughout his entire life he has only been out of the hospital for one week.  Henry was discharged on 2/24/17 but was readmitted last week due to complications from his GJ tube.

Henry is currently on ten different medications to regulate his blood pressure in addition to two diuretics, thyroid, aspirin, two acid reflux medications, vitamin D and a prescribed inhaler.  He will continue to be on all of these medications until after his next open-heart surgery where doctors will reevaluate his condition.  Because of his battle with CHD, Henry faces a lot of restrictions.  He cannot tolerate food in his stomach which is what his GJ tube is for, he also cannot leave the house except to go to doctor’s appointments because contracting an infection could cause major complications for his heart and body.

Henry’s parents describe him as the happiest boy ever with the sweetest heart!  When asked what challenges they face being a CHD Family, Henry’s Mom, Jenn, said the following:

My husband and I have two other children – Benjamin (six) and Harper (three).  We spent the majority of our pregnancy getting the kids eager for Henrys arrival – excited to be a big brother (again), and a big sister for the first time.  Once Henry was diagnosed, we had to try to explain to them that Henry was special and that doctors needed to work on getting him better before we could bring him home.  After Henry was born, we spent seven weeks living in a hotel in Boston so we could be near the hospital as we live about two hours outside of the city.  We had family members living at our house with Benjamin and Harper while we were gone.  The kids would come up to visit us for a couple days at a time, but after those visits we would have to send them home.  Trying to explain Henry’s condition to them has been challenging.  Splitting time between three kids, especially when one is in the hospital, has been challenging.  Trying to be positive and upbeat for them has been challenging.  But, as challenging as it has been, I find myself telling people that it is Ben and Harper that keep us going.  Knowing that we have to be there for them and be strong for them is a big part of what has kept us sane.  My husband and I both took our 12-week maternity/paternity leave to be with Henry, after the 12 weeks was up my husband had to return to work.  I was able to extend my leave, however that has currently run out and I had to resign from my position at my company.  I will be out of work until after Henry’s next surgery, at which time I will have to take on another position which allows me to work from home as we cannot put Henry in child care.

congenital heart disease

When asked what inspires them about their child, Jenn and Joel answered,

Probably the incredible amount of strength he has.  When henry was diagnosed, they gave him a 50% chance of survival.  This kid is a trooper, with all the stuff he’s been through, he still keeps smiling at everyone he meets.  It seems that nothing keeps him down.  He will go through an uncomfortable procedure with multiple doctors and nurses holding him down and minutes later he’s back to smiling and cooing.  We look back at everything he has been through over the past four months and he has done so amazing.  Henry has been through more in those four months than most people go through in their entire lifetime.  He has far exceeded any expectation the doctors have set for him, and the best part – he is an unbelievably happy baby.  Every nurse and doctor that works with him comments on how happy he is – constantly smiling, playing and sticking his tongue out at everyone.  We were told that there would be some development delays due to his diagnosis and being on a breathing tube for as long as he was but he is already showing that he is right where he should be developmentally.  He is so unbelievably strong, it is such an inspiration to us all.

Henry is the ultimate definition of someone who gets knocked down and gets right back up again. Nothing is easy for him, every hurdle he has overcome was more like a mountain.  It was always one step forward and two steps back.  But through it all, he never once gave up.  He pushed through everything he had to overcome, he climbed those mountains and slid down the other side, smiling the whole way, and then he would have to do it all over again.  I wish I could say I have the strength Henry has, I don’t think I could go through what he’s been through and keep smiling.  That is the most amazing part – all kids with CHD that face these hurdles are tough as nails.  They go through hell and come out smiling, ready to go another round.  They don’t complain, they don’t wine, they don’t say “why me?”  They accept it’s what they have to do, they do it and they move on, never letting it stop them from living a happy life
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About Henry’s Heart Defects

Aortic Valve Stenosis (AS)

Aortic stenosis is one of the most common and most serious valve disease problems, it describes the narrowing of the aortic valve opening.  AS restricts the blood flow from the left ventricle to the aorta and may also affect the pressure in the left atrium.  While some have AS as a result of a congenital heart defect, this condition more commonly develops during aging as calcium or scarring damages the valve.  Many people with AS do not experience noticeable symptoms until the amount of restricted blood flow becomes significantly reduced.  Infants and children who have AS may exhibit symptoms such as:
  • Fatigue upon exertion
  • Failure to gain weight
  • Poor or inadequate feeding
  • Breathing problems

aortic valve stenosis

Mitral Valve Defect

Mitral valve disease refers to irregular conditions of the mitral valve.  This valve is located between the two left chambers of the heart.  It works to keep blood flowing properly in one direction from the left atrium to the left ventricle and prevents it from flowing backwards.  There are three different defects: mitral valve stenosis, mitral valve prolapse and mitral valve regurgitation.  When the mitral valve does not work properly, symptoms such as fatigue and shortness of breath occur because the defective valve is allowing blood to flow backward into the left atrium.  However, many people with mitral valve disease experience no symptoms.

mitral valve defect

Left Atrial Enlargement (LAE)

This condition refers to the enlargement of the left atrium in the heart.  While some forms are congenital, it is most common in obese adults.  If left untreated, LAE can lead to death.  Symptoms include:

  • Shortness of breath
  • Swelling of the legs
  • Fatigue
  • Weight gain
  • Fainting
  • Palpitations
  • Dizziness or lightheadedness
  • Blood clots in the dilated left ventricle because of pooling of the blood

left atrial enlargement

Intact Atrial Septum (IAS)

Intact atrial septum sometimes occurs in patients with hypoplastic left heart syndrome (HLHS) but can occur on its own as well.  With partial or complete closure of the atrial septum, flow is diverted away from the left atrium and left ventricle, this has little effect while the child is still in utero.  However, at birth, elevation of blood pressure in the left atrium due to IAS causes a shift in the distribution of blood flow away from the blood vessels of the lungs, resulting in dangerously low oxygen levels in the blood.

Sources: heart.org, healthline.com

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