Joshua’s story by Mum, Sarah

I was about 16 weeks along when I went for an ultrasound. I’ve always been high-risk because of being diabetic and losing 5 babies. I saw the flicker of the baby’s heartbeat and thought everything was ok. Then the doctor came in and said “As you know, we’re looking at a large hole in the heart,” no, I didn’t know.

The next few weeks were a whirlwind of genetic testing and the OB kept asking if I wanted to abort. For me, no matter what the outcome would be, I couldn’t do that. April 28, 2009, Joshua was born via c-section. The NICU at the hospital gave him to me to see for only 2 minutes before they transferred him via ambulance to the Children’s Hospital of Michigan. I busted my butt to get discharged so I could be with my baby. I didn’t get my staples out for a month because I wouldn’t leave him to go back to the other hospital.

The first time I saw him, I was terrified. I wasn’t prepared for him to look like that, with all those wires and tubes. They had done testing to see what all was wrong and he was diagnosed with Tetrology of Fallot, Pulmonary Atresia, Complete Atrioventricular Canal Defect Type A, as well as a T3 hemi vertebra and an inferior and swivelled right kidney.

The BT shunt was done at 8 days old. Unfortunately, my sister, brother and cousin were also due around that time so I was alone. He was in the NICU for 3 weeks and before he could be discharged, I had to learn CPR as well as how to place his NG feeding tube. The NG tube was the scariest for me and deservedly so. He wound up pulling it out at least 5 times a day and was later diagnosed with choeneal atresia and CHARGE Syndrome as well. He had failed his new-born hearing screening four times and it was discovered that he had bilateral sensor neural hearing loss.

At 4 months of age, he received a G-tube and at 10 months, the Mick-y button. He was in OT and PT to help him to learn and eat and develop his gross motor skills. He had a heart cath in Oct ’09 and it was discovered that he would need the repair soon and his O2 sats were at 49, so on Nov 10th, at 6 months of age, he had his tet repair. My sister, mom, aunt and grandma were with me when the nurse came out and said “there were complications”. He had such a difficult time during the surgery and post-op, I was so afraid I was going to lose my little boy. He had to be intubated four times as he kept crashing. His breathing became retracted and it was discovered that his right lung had collapsed and blood was pooling around his heart. That was horrible for me to see my baby struggling like that. They had to do a conduit as opposed to the patch so he will need surgery to replace the conduit every 2-5 years. His mitral and tricuspid valves both leaked after the repair but the tricuspid closed up on its own. He had surgery to repair the mitral leak, replace the conduit and do a pulmonary angioplasty on Aug 23rd 2011.

He suffered a min-stroke post-op and it took weeks for him to fully recover but thankfully, he did recover. He has also had surgery on his ears and his testicles.

For now, he is a happy, smiling amazing warrior and I couldn’t be prouder to be his mom.
Sarah Price (USA)
Mom to Joshua, age 2