Madison was born on August 30th, 1994. She had a planned delivery for the beginning of the week because I had found out 10 days before my due date that something was terribly wrong with my baby's heart. An ultrasound showed that her heart was on the wrong side and we had to go to the University of Alberta Hospital to have a fetal echocardiogram. This showed that one side of her heart was very underdeveloped and they could only see 1 of the greater vessels (which they hoped was the aorta). She was so big and already in position that we had to wait until she was born to find out the whole picture. So we had a planned delivery and she was 8lbs 10oz. That was the 1st and only time that Madison was at the top of the growth chart or should I say actually on the chart.
We discovered that she had right-sided hypoplastic left ventricle, double outlet right ventricle, dextrocardia, total anomalous pulmonary venous drainage, sub-pulmonary stenosis and mirror image branching. Because her heart was on the right side then everything else shifted. She had a mid-line liver and there was no room for a spleen so she is asplenic.
She went to NICU right away and started crashing fairly early and had to be intubated until they could figure out exactly what they were dealing with. People couldn't understand why this big baby was in the NICU in amongst all the preemies. She was there for 2 weeks and I had her home for 1 week and then we returned to hospital. Her oxygen saturations were about 45% so she had surgery at 4 weeks of age. This was the BT shunt. Her oxygen levels went up to about 76%. Because Madison had no spleen she was more susceptible to certain infections like Strep, Meningitis and Pneumonia. She is on Penicillin for life to protect her. Her little body was working so hard just to function that she seemed to come down with lots of respiratory infections and we were in hospital every couple of months for a 10-14 day stay. She got RSV, Pneumonia and Bronchiolitis and needed to be in hospital usually for chest physio and oxygen to get her back on her feet.
Madison was very tiny. She was about 18 lbs at 18 months of age. We weren't sure if we were ever going to be able to turn her carseat around because of her weight. At about 18 months she underwent her 2nd surgery which was the Glenn Shunt. We had a Dr. from Saudi Arabia. They called him Dr. Desert Storm because he flew in, did surgery on about 20 kids and flew back out again. Madison came through this surgery very well and her saturations were about 85%.
Her 3rd surgery was the Fontan and she was just over 3 years of age. This surgery was very hard on Madison because of her unique heart and we thought we were going to lose her at one point. She spent 3 weeks in the PICU and we got out just before Christmas. Madison had a stroke and had to learn to walk again. She was then saturating in the low 90s. Amazingly she bounced back fairly quickly. We noticed that now having had the 3 surgeries that she wasnt getting sick as often and really didnt need to be hospitalized anymore for upper respiratory infections like before.
Madison is now 16 and is a beautiful girl, although still tiny. She just hit 5 feet and only weighs about 90lbs. She has had some struggles in school and we wonder if it was due to the stroke but after being on bypass 3 times, Im sure there were lots of blips and bubbles that went through that little brain. We look back now and realize that she probably spent about 1 year total in hospital and possibly that is why she is behind. She just started Grade 10 in a Try10 program and has a good circle of friends. Madison is on several medications to keep things in check and her oxygen saturations have been slowly dropping so they're monitoring her closely. Madison now has 2 brothers that are healthy and drive her nuts. They are 9 and 7.5 years old.
We joined the Childrens Heart Society shortly after Madison was born and have found constant support and friendship throughout Madisons journey. We have hopefully been able to provide some comfort and relief to other families that have children with similar hearts to Maddys