Andrew, born 2004

Andrew is our third son. We discovered his heart defect during my level II ultrasound that was requested because of my age. I had four fetal echocardiograms and an MRI by the time he was born which confirmed that he had Tetralogy of Fallot with Pulmonary Atresia. The idea behind doing the MRI was to get a better look to see if Andrew had any collateral vessels.

 

Andrew was born on October 5, 2004 via a normal vaginal delivery. He was given prostaglandin to keep his PDA open and then transferred to Children's Hospital of Philadelphia. When he was three days old, he had surgery to repair the defects of TOF. The surgery was successful and he did end up having some collateral vessels which were coiled.

 

After surgery, he recovered in the CICU and was on a ventilator and had several lines and tubes going in and out of him. As any other heart parent can attest to, it was a very difficult time. The worst part was not being able to hold Andrew. I would read and sing to him every day and made sure that lullabies were played to him on a portable tape player that we kept near his crib.

 

After two weeks, his body was having a difficult time clearing excess fluids. His body was blown up like a balloon. A decision was made to do a catheterization where they discovered a very large collateral vessel coming off his aorta that was diverting blood away from his lower body. An initial attempt was made to plug off this vessel but in the process his pulmonary artery was perforated and he bled and went into cardiac arrest. They were able to stabilize him after five minutes of CPR. Thankfully, we have seen no effects of this trauma to date. After the cath, he slowly began to improve but remained in the CICU for a total of six weeks. Four days later, he was discharged on November 22 with oxygen and a NG tube.

 

For the next five months, Andrew remained on the NG tube and oxygen and had moderate reflux. We began working with physical and occupation therapy to help him with his motor and eating skills. Andrew's turning point was when he had a catherization on April 22, 2005. He had a stent placed in his left pulmonary artery. Following the procedure he was able to get off the oxygen and his sats have remained in the upper nineties ever since. Shortly after this, he began drinking from the bottle and no longer needed tube feeding. He's still in the 10% percentile for weight, so we're hoping for some catch up weight soon.

 

Story by Andrew's mom, Kimberly - Pennsylvania