Ian’s Story

Ian’s story began on March 8th 2013 with a positive pregnancy test. After a recent miscarriage, we were excited, but nervous about what the next few months would bring. We were thrilled when we saw a heartbeat 4 weeks later on an ultrasound, but still cautiously awaiting the 12 week screening.

The ultrasound tech at our 12 week screening took an extra long time and called in several helpers, which tipped us off that something may not be quite right. As it turned out our baby’s right arm appeared to be very small. Justin and I both immediately thought this was no big deal – he/she would be fine. Later we would find out that we were having a baby boy and that he also had a congenital heart defect called Tetrology of Fallot with absent pulmonary valve. While congenital heart defects occur in 1/100 birth’s, Ian’s variation of this heart defect is very rare. We now know that this condition often has poor outcomes because of airway and lung issues that result from huge pulmonary arteries.

Our pregnacy continued to be closely monitored and on November 13th doctors decided it was time for our baby boy to come out of his safe little bubble. Ian Joseph Orbich was born at 2 pm at 5lbs 10oz and 19 inches long. Upon arrival at the Cardiac ICU at Children’s Hospital of Pittsburgh, Ian was in much worse shape than anyone expected. Despite being on a ventilator, he was blue. His lungs were not working. Ian was put onto heart and lung bypass (ecmo) and doctors prepared us for the worst. Even if they repaired his heart, his large pulmonary arteries had inhibited the growth and development of his airways and lungs. He was also had DIC which is essentially septic shock.

We weren’t able to hold Ian, but every day we held his hand as he looked at us with his huge beautiful eyes. At 7 days old Ian underwent open heart surgery. If this was successful, we expected a long recovery of several months with the strong possibility of going home with a tracheostomy. Ian came out of surgery on ecmo. He remained on ecmo for 4 more days and again developed DIC. We were reminded several times that he was very very sick. He weathered through this like a warrior and never once showed us any signs that we should give up on him. You could see in his eyes that he was a fighter. About a week later he turned a corner. He persevered, getting stronger every day. To everyone’s surprise, he handled coming off the breathing tube very well. He did not need the trach! On December 24th 2013, we took our baby boy home after 6 weeks in the hospital.

On January 14th Ian was readmitted to Children’s for respiratory distress. After 2 1/2 weeks of more pokes, prods and tests it was determined that a portion of his airway was only 2mm wide. If you do a quick internet search of 2mm, you will find that it is about the thickness of a quarter. We quickly found out just how dangerous this was when his breathing tube clogged and he had a cardiac arrest. On February 1st, Ian underwent a second major surgery at just 12 weeks old to repair his airway.

In his 12 weeks of life Ian has had more x-rays, needle sticks, ultrasounds, and surgical procedures than most people will in a lifetime. Despite this, he is a content and happy baby. So far he seems to be just slightly behind on milestones and is receiving physical and occupational therapy to help him catch up and stay on track as he grows. He wasn’t expected to live let alone do as well as he is doing today. He is a true miracle. We couldn’t be more proud of him and his story is only beginning.