Aaron (2009)

Update: April 2013

Aaron continues to do very well. He has check ups by his cardiologist once per year and his heart has been doing very well. He now plays soccer and is really having a great time. He has also started pre k last fall and has enjoyed making new friends.

- Rene LeBlanc

Aaron's Story...

During a routine 21 week ultrasound it was discovered that our son, Aaron, has multiple congenital heart defects, none of which are genetic. In fact, there is no known cause for the combination of heart defects Aaron has been diagnosed with: corrected transposition of the greater arteries, a large ventricular septal defect, right ventricular hypoplasia, atrial septal defect, dyplastic tricuspid valve, malposition of the great vessels, near atresia of isthmus and hypoplastic arch. Ultimately, the most significant heart defects (ventricular inversion, a small right-sided pumping chamber, and a very large VSD, or hole in his heart) require surgical intervention.

On August 11, 2008, Aaron was born at Brigham and Women's Hospital in Boston, MA. He weighed 7 lbs 8 oz and looked like a healthy baby boy. He was, however, transferred to Children's Hospital Boston within the hour and given a room in the Cardiac Intensive Care Unit. Then, three days later, he had his first heart surgery to correct the forestation of his aortic arch and pulmonary artery band placement to prevent too much blood from entering his lungs.

Although he was placed on bypass and a ventilator, he did very well! He was able to be taken off of the ventilator within a couple of days and his pain medication went quickly from the heavy-duty stuff to Tylenol. His only complication was a partially collapsed lung that re-inflated with chest percussion. He was moved to cardiac step-down unit 7 days post-operatively and was finally discharged 2 days later. Thankfully, we were able to take him home on a flight back to Lafayette, Louisiana the day after his discharge!

After being home, he began to see his pediatric cardiologist once/month. At least one more surgery was expected to occur after waiting to see if the small right side of his heart grew. As Aaron approached the 6 month mark, it was determined that it was time for another heart surgery. We flew him back to Boston on March 1, 2009 where he underwent over six hours of testing (ekg, echocardiogram, etc.) followed by an additional day of testing to obtain an MRI of his heart and heart catheterization in order to determine the best surgical route.

Aaron ended up undergoing his second open heart surgery on March 4, 2009 for a double switch operation. This surgery included detaching and reconnecting the aorta and pulmonary arteries to the correct atrium. The surgeon then created new vessels to connect the atrium to the correct ventricle. Although it was a rare and risky procedure it will provide the best long-term outcome for Aaron. After being separated from Aaron for 9 hours we were finally able to be at his side again. The doctors felt as if the repair went well. The only minor complications he had at that time were a heart arrhythmia, most likely due to swelling, and a little skin rash, possibly from medication or the drape used in surgery.

After 3 days, Aaron was finally off of the ventilator and external pacemaker. He had his arterial line and central venous pressure lines removed as well. Aaron finally gave us his first smile 5 days after his surgery and on day 6 post-op, he was transferred to the cardiac step-down unit. On March 12, 2009, Aaron's last two of the three chest tubes were removed. As always, he took it like a champ and did not even cry. He definitely seemed more comfortable and his chest x-rays were negative for fluid. We were given discharge instructions for medications and had begun to pack our things. Flights had even begun to be researched and travel arrangements were almost final until about 1:00 p.m. on March 14, 2009 (10 days post-op). At that time we were told that the discharge was going to be delayed.

Aaron's chest x ray that morning had shown a bit of fluid accumulation around his lungs and of further concern, we found out that a swab taken of the graft material used to repair Aaron's heart had grown bacteria. It has yet to be determined if Aaron actually has the bacteria in his heart or if it will be harmful to him. Furthermore, the doctors have not been able to identify the specific name of the bacteria. It then became necessary for him to have chest x-rays and blood cultures each morning.

The function of Aaron's heart following the surgery was stellar, yet the fluid was continuing to drain in his chest. Therefore, he was switched back from and oral diuretic to an IV diuretic. We were then given the news that the bacteria found on the graft, used in Aaron's repair, was extremely rare. In fact, it was so rare that the lab in the hospital couldn't process it, so it had to be sent to the MA state lab for analysis. Thus, Aaron was started on three IV antibiotics right away. By March 17, 2009, Aaron was receiving medicine via IV for the fluid still in his chest in addition to the 3 antibiotics given via IV . His poor little veins were taking quite a beating. The IV in his hand began leaking and since antibiotics are very tough on little veins, he received a PICC line instead of an IV line. Aaron had to be lightly sedated for the PICC line insertion and as usual he took it very well. The PICC line was better able to handle the volumes of medicines that Aaron required. Thankfully, it also allowed for blood draws without needle sticks each time! Unfortunately, we also learned that one of those powerful IV antibiotics can cause balance issues and hearing loss, creating a need for hearing tests. His hearing appeared to be fine at baseline but an ABR (auditory brainstem response) test was recommended which required more sedation. With much relief to us all, he ended up passing the ABR with flying colors, although it was difficult to have our baby sedated once again!

Finally, by March 20, 2009, we were officially able to discontinue the IV antibiotic with the highest risk of adverse effects. The bacteria were still being analyzed in the lab so its name continues to be unknown. After conferencing with the doctors, they were still very concerned with the type of bacteria and recommended that Aaron continue to take oral antibiotics for another 3-6 months.

Meanwhile, the fluid in his chest accumulated enough to remain on the IV diuretics, so the PICC line was still in use 16 days post-op. Additionally, Aaron was taking 6 oral medicines twice/day plus Tylenol and/or Mylicon when he was fussy. Furthermore, his labs showed a low potassium level (likely due to the high amount of diuretics that he had been taking) and since potassium is needed to make the heart beat correctly, Aaron was also started on an oral potassium supplement. All of the meds together made up quite a large volume, so his eating had become affected.

On March 25, 2009 we got the good news that Aaron was to be discharged and we would be able to fly home with him the following day. Recent x-rays showed that the fluid in his chest had diminished and he was discharged taking several oral medications. This pleased us as we were able to have his PICC line removed. Since our return home to Lafayette Aaron is doing well. We are being followed very closely by our local cardiologist and pediatrician and are hopeful that the large volume of medication that he is required to take will decrease soon.

After flying cross country to Boston, MA and spending 26 days there we are, as you can imagine, very happy to be home. We are also very thankful that we were able to seek out the best possible medical care for our special little boy.

"Kenna's Kids is an amazing organization run by people who truly care. Kenna's Kids ... helped to relieve a great deal of stress for our family and we were then able to focus on what truly matters, caring for our son."

JANE & RENE' LEBLANC