T.D. Jakes
Tuesday, November 7th - Days in the NICU: 6
Dr Aimen Shaaban is the man who saved my child's life. He is the doctor who led us to choose Lurie Children's Hospital and we are so glad that we did.
We arrived at the NICU around 9am so we could spend some quiet time with our son before his big day. We whispered loving thoughts and prayers, smoothed his auburn hair and told him how proud we were of his strength and resilience. Kieran was collected by the anesthesiology team around 1:30pm. Dr Shaaban came in to meet us prior to surgery and again thanked us for entrusting him and his team to care for our child. His demeanor was so warm and genuine; Brian and I knew that he was going to take the best possible care of our little peanut. He reviewed the plan again, confirming that they hoped the surgery wouldn't require an incision in his belly or chest and that they could do the repair with cameras. However, they would update us throughout the procedure on how things were progressing. After they wheeled his little bed out, I had a good solid cry and we prayed for a smooth surgery.
Our parents were kind enough to come down to support us and help us pass the time during the surgery, so we met them in the cafeteria at Prentice around 2pm to head out for some lunch.
3 pm
The surgical nurse called to confirm that surgery had started and Kieran was doing well.
4 pm
The surgical nurse called again to explain that the repair would require an incision in Kieran's chest, but he was still very stable and doing well. She would call us back in a couple of hours with another update.
6 pm
Another call confirmed Kieran had made it through surgery and they were prepping to close up. He would likely be back in his room in about an hour.
7:45 pm
Kieran was back in his room and the surgical team was ready to debrief us on what happened in the OR.
Brian and I proceeded back up to the NICU to meet with Dr. Shaaban and his team. Honestly, I was expecting them to tell me that more than half of his diaphragm was missing (which is why they needed to make the incision) and they needed to place a Gore-Tex patch to repair it. The use of a Gore-Tex patch has a high rate of re herniation because it cannot grow with the baby's body, thus further surgeries are typically needed. As it turns out, it was so much more than this.
To summarize very briefly, Kieran's condition presented a major curve ball; he was born with a right sided congenital diaphragmatic hernia with hepato pulmonary fusion. Ultimately, Kieran was born with the hernia as diagnosed prior to birth that allowed the liver to infiltrate his chest cavity. However, instead of just impeding the right lung from growing, the liver and the lung were actually fused and grew together as one mass. This is a VERY rare condition and we were only able to find evidence of 14 other published cases in the world. Unfortunately, it is also a condition with a very high mortality rate during the repair surgery.
This is the part where Dr. Shaaban becomes our ultimate angel - he was able to separate the lung from the liver, move the liver back into the belly and repair the hernia without a Gore-Tex patch. The surgical team did determine that it was in Kieran's best interest to remove the lower lobe of his right lung because the tissue was very thin and had holes - keeping it would have likely presented additional health concerns down the road. He explained that this decision wasn't made lightly and they concluded that it was the best course of action. The doctor explained that Kieran has plenty of lung tissue to support his pulmonary health; he now had two lobes on both sides (your left lung has two lobes and your right lung has three).
Dr. Shaaban and his surgical team were strangers to us one month ago and yesterday they saved our child's life - literally. How do you even begin to thank someone for that? I was at a loss for words beyond a small "thank you" between sobs. He shook Brian's hand and gave me a warm, comforting embrace and told us to go see our son.
While we know that we have a VERY long road to recovery ahead of us, we have been witness to a true miracle. Had we not discovered that Kieran was going to be born with a congenital defect prior to birth, allowing us to prepare this exceptional team of highly skilled professionals, I honestly fear to think where we would be today.
Yesterday was the toughest day of our lives, by far. The spectrum of emotions we experienced cannot be put into words and there were moments of pure relief and terrifying fear... I'm still feeling them today. To see your child with tubes and IVs everywhere, knowing that he is experiencing pain... I would give anything and everything to take it all for him. The emotional hurt we are experiencing seems like something so intense that we shouldn't be able to survive it. But we are parents now and this is what parents do - whether their child is six days old or sixty years old. We have to be strong for him, take each day as it comes and try to be as positive as possible. He needs us to be strong. However, as we know officially now, Kieran really is the dark horse of this race - he is our little warrior and we are so very hopeful that he is going to thrive with all of his guardian angels by his side.
"For He will command His angels concerning you to guard you in all your ways"
Psalm 91:11
