Miracles come in all forms. Kian, “The Miracle Baby” is a story worth reading….
Korena found out when she went in for her 20 week ultrasound to determine the sex that not only was her baby a boy, but there was also something not quite right with him. They were leaning towards down syndrome, which she was completely accepting of, but then found out that her baby was the youngest ever to be diagnosed with KBG syndrome. There had only ever been 187 cases of this rare heart disease worldwide, EVER, which means they had no idea how to treat it. This disease affects several body systems and with her sweet baby Kian, it attacked his heart.
The minute Korena delivered him, via c-section, he was swept off to the children’s hospital adjacent to the university hospital where she delivered him. He needed surgery right away, but they couldn’t do it because his lymphatic system did not fully develop which caused his fluids to seep throughout his body and swell. They didn’t want to risk doing the surgery, since heart surgery causes swelling, and Kian couldn’t afford to swell anymore than he already had. But time was running out for him and they had to make a decision to do it before the window of opportunity had closed. They decided to take the risk. While doing this surgery, the doctor poked a hole in the back of his heart.
Korena didn’t get to hold her baby for three days. Finally, they placed him in her arms for the first time. A flood of emotions rushed over her. Kian had yet to open his eyes, even though his mama could tell he was trying to. Since the doctors didn’t know how to treat it, they started to blame everything that was going wrong on the condition, but Korena had been doing her own research and knew that it was different. The fight to help his heart was extremely hard and frustrating. There were a lot of unknowns and a lot of mistakes.
Korena was on this journey alone, the dad was not there with her. Luckily, her mom, Julie was. They got extremely close throughout this time and she is ever so grateful for her.
If only they new more, maybe they could save my baby!
A few days after the surgery, baby Kian went into cardiac arrest and stopped breathing. Julie recalls the moment as if it were only yesterday, “Korena was on her way back to the room and said she felt her heart flutter and knew something was wrong… and then they called her. I rushed back down to Kians room to see a lot of doctors and nurses doing compressions on him. Korena and I stood there crying and confused. After 45 minutes. They pronounced him dead. Everyone started leaving. Kian was too swollen to close his chest after the surgery so he had a clear bandage over his heart to keep it safe, which had broken open during compressions. As they were leaving, they handed him with tubes and an open chest to Korena so that she could say good-bye and walked out.
She looked at me and said, ‘I don’t know what to do!’ I told her to talk to him, tell him you love him. She started kissing him and talking to him. I looked up at the monitor and saw that his blood pressure was rising! He had a Pace maker in also, and it was doing something strange on the monitor. I asked the nurse about it and she said that it was just the pacemaker making his heart move and keeping it going and I asked her, ‘Are you sure? Why are his vitals going up and why is the pacemaker skipping?’
She said, ‘It skips when the natural beating heart is competing with the pacemaker.’
Then I said, ‘What’s happening?’
‘Just a minute,’ she muttered and left the room. She came back with a doctor.
I repeating over and over, ‘What’s happening? What’s going on?’ All of a sudden they grabbed Kian from Korena and everyone started coming back in. The whole time I was saying, ‘What does this mean? What’s happening?’
My husband, Korena and I all started crying. He was alive again! He came back to us!
It truly was a miracle, because after that, he started getting better!”
For two more weeks Korena and Julie got to bond with Kian. He was even opening his eyes! She never wanted to leave his side. When asked if she wanted to go get some fresh air she would politely decline. Something in her knew she didn’t have long. There is something that happens when you lose a child. A feeling that comes over you as if their spirit, or their energy lets you know that you will somehow find a way to heal. I believe it’s that point where you know there is nothing left you can do. On May 28, 2018, Korena felt that moment too. That morning she opened her eyes to see hustle of nurses and doctors pouring into her room, she just laid there watching. That wave of complete calmness came over her and she knew she had lost her baby forever.
Later the autopsy reports would show that, (in his opinion,) Kian died from the puncture wound in his heart.
Sweet Korena and her mom, Julie, are so brave to allow me to share their story. It is not an easy one to tell. It is still very fresh and extremely painful for both of them. Korena knows she has a long road of healing to do, and she hopes one day she will be able to use her loss to help others find out more about creating awareness for the KBG Syndrome, so the next time a medical team discovers it, they can have the tools, skills and resources to save the next life that is placed in their hands.