Maxwell at the 2004 Heart Walk

September 2004

March 2004

Maxwell

Pizza tastes good!

Taking a ride...

NEW

Maxwell's HLHS was diagnosed at 20 weeks gestation, though a level II ultrasound. They were looking for neural tube defects, because my sister has spina bifida, and found that I had a two vessel umbilical cord, and then found his defect after that. We were stunned, to say the least. In the months following, we met with the cardiologists and the surgeons, to discuss our options. As it happened, our local hospital had recently hired a new surgeon. who's specialty is minimally invasive treatment of HLHS, through a hybrid approach, in the cath lab and OR. After meeting with him, and discussing his alternative to the traditional staged surgeries, we decided that what he said sounded perfect for our little one. So, without much in the way of data or statistics to back it up, we agreed to the method. On November 22nd, 2002, after 27 hours of labor, Maxwell was born and immediately taken to our Children's Hospital. After a few days of rest, he was taken to the OR, where Dr. Galantowicz placed pulmonary artery bands, and then taken to the cath lab for a PDA stent. This is the first stage of the "new" surgeries. MAx did not do well in the cath lab, and his right femoral artery was occluded- so sa second attempt was made 5 days later, and went very smoothly. After the surgery MAx developd feeding problems that kept us in the hospital for 33 more days (38 total). We took him home for the first time on 12/30/02. It was wonderful. We had weekly visits with the cardiologist- and his feeding issues continued, but all in all, he was doing great. At 3months 2 days, he had his "comprehensive stage II"- this is , aortic arch reconstruction, D-K-S, Pa De-banding, ductal stent removal, bi-directional glenn shunt...this all went very well, and we left the hospital in 10 days. We had two wonderful years of growth and feeding and normal childhood, and just this past March, after a cath, we decided it was time for the Fontan. On May 16th, 2005, Maxwell had his Fontan. Dr. Galantowicz does a modified version of the Fontan, involving the use of the child's own pericardium and a patch of bovine pericardium, to allow the child to use only his own "stuff". This "conduit" will grow with him and be as nature intended him to be- without any foriegn materials in his body. His fontan was accomplished without cariac arrest, or the use of blood products. We are grateful to our doctors and nurses for all that they have done, Dr. Galantowicz and the cardiologists are our forever heroes.

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Maxwell's HLHS was diagnosed at 20 weeks gestation, through a Level II ultra-sound. We feel very lucky to have had this information early, but also know that knowledge does not equal preparedness. Given the opportunity between the Norwood procedure, "Comfort Care" and heart transplant, we chose the Norwood. However, several weeks after making our decision, we were introduced to a brand new surgeon, with a brand new technique. Instead of having an open heart procedure in the first days of life, Dr. Galantowicz, our new surgeon, had developed, along with a team of cardiac interventionalists, a less invasive, hybrid procedure that involved open the chest and banding the pulmonary arteries and moving to the cath lab to stent the PDA. Although new, and without much data to prove it's effectiveness, it sounded very good to us, so we took the leap.

We were completely unsure if we had made the right decision, knowing that the chances we took on paper would play out in our son's heart. Ultimately, the procedure didn't go so well the first time, there were complications in the cath lab that prevented the stent from being placed, and his right femoral artery was compromised in the process. But, after a second try, the stent was placed and Max pulled through just fine.

Then, there were the feeding issues. Max had problems keeping food down and staying awake long enough to consume the calories he needed to gain weight, so, 35 days later, we left the hospital with an NJ tube. For those of you lucky enough to have never faced feeding issues, this tube goes through the nose, past the stomach and into the jejunum, requiring a trip to radiology every time they pull it out. Max was on a continuous feed and wasn't tolerating bottles very well, so we really didn't push the issue much during the period between the first procedure and the second.

At six weeks, during one of our weekly check-ups, Max had a coarctation of the stent and needed a trip to the cath lab to balloon it open. Luckily, this was a one night stay and we even had the chance to pick a surgery date, while we were there.

At three months, two days old, Max had his second, more involved, surgery, the placement of the bi-directional Glenn shunt, with Damus-Kaye-Stanzel. This procedure was considerably more difficult and riskier, because it is open-heart and the infants have to be put on heart/lung bypass. It was certainly much harder to see him carried away for this surgery, because we had taken him home for a while and finally really felt like parents to him. Max did extremely well, and we were in and out in 10 days, still with a feeding tube and the added bonus of oxygen for the weeks following the surgery.

This surgery proved to be a turning point for him, though, and he started having the energy to eat and with the pressure off about the calories, we became more aggressive with the bottle feeding and were able to wean him off of the tube and the oxygen shortly after surgery.

Since we left the hospital in March of '03, Max has had no procedures and has grown and developed into a normal, happy toddler. As you can see in his pictures, there are no weight gain issues these days. He loves to run, ride his Tonka truck and play with his sisters and cousin.

We feel like the luckiest people in the world to have had the opportunity to have Max's heart worked on by Dr. Galantowicz, Dr. Cheatham, Dr. Cassidy and the entire team at Columbus Children's. The staff have been compassionate and caring throughout our journey and we hope to continue updating Max's portrait with good news and positive progress, for the remainder of his life.