Lukas's Journey

Child of the week: Lukas

Lukas was born August 11, 2011. Five days after he was born, he was to the Stollery Children’s Hospital in Edmonton. His organs had already begun to shut down. After numerous tests they found out he had Hypoplastic Left Heart Syndrome or better known as HLHS. In HLHS, the left side of the heart – including the Aorta, Aortic Valve, Left Ventricle and the Mitral Valve are underdeveloped. This was not found in utero. 

To fix this 3 surgeries are needed.  The first, the Norwood Sano Procedure was done August 29th, 2011. The surgery performed by Dr. Rebekya was completed in about 4 1/2 hours, and was then followed by 3 attempts to take Lukas off the heart & lung bypass he was on during surgery. Lukas came out with a very long road ahead of him. Over the next 9 days he would then be on ECMO (form of life support) and from there it would lead him down a long road of complications.

 Some of the post-operative complications that Lukas has had to overcome have included a hole in his right lung, a chronic collapsing left lung; poor kidney function resulting in needed dialysis, and lastly a stroke which unfortunately led to damage in the right cerebral hemisphere of his brain. This portion of the brain controls abilities such as moving, tasting, touching, hearing, seeing, behaving, and thinking. However there have been a number of Doctors and Nurses, commenting on how resilient babies are, and how their brains can re-map themselves. 

Signs of this is already showing. He has hemiplegia which means that one full side of his body has paralysis. For him it is his left side. He seems to be recovering little by little. His family credits his progress to the Grace of God. I have watched this baby fight and prove over and over that you shouldn't believe every prognosis you hear.



You can visit his page at https://www.facebook.com/pages/Pray-For-Baby-Lukas/245854215452721


Send him some happy thoughts and prayers.

Liam Lyon: hypoplastic left heart syndrome

 I would like to introduce you to Liam Lyon. And has his last name suggests he is ad mighty as any lion out there in the Sahara. And certainly cuter. :) He has been fighting since birth, beating all the odds placed in front of him. This baby who is only 15 months old has touched the hearts of not only his family and the hospital staff but a good 34, 819 people via Facebook who watch his progress online. And of course, I am one of them and he has touched my heart and I would like to share him with you, the world today about why he's so awesome.

He was born with HLHS or hypoplastic left heart syndrome and has already had a heart transplant.  What this means is that the left side of his heart did not develop properly. This is a congenital defect or in other words developed at birth.  This disease is rare and usually develops more in males than females. This condition makes it much harder for the heart to send enough blood throughout the body. He has 4 palliative surgeries, surgeries to repair some of the damage but that didn't work so he had a heart transplant on 7/25/11.

Liam was saved thanks to the generous giving of a child's heart from extremely selfless parents. While something difficult, it gives another child or adult depending on the situation, a new chance at life. And in some ways, I believe it is a chance for that person to help someone live on, even though they can't anymore.

 He had some damage done to his iliac veins and his inferior vena cava so he has poor venous drainage from below his kidneys. He had poorly developed lung cartilage so his lungs are a little floppy. He is on meds that make him puffy but he also has problems with fluid retention because of the venous drainage. The doctors and family hope he can grow enough collateral circulation to handle that. He will be helped by the trach and the ventilator until his lungs grow up enough to stay more rigid. He will be on a feeding tube until he can eat on his own. And he will learn sign language and use a passy muir valve. He will be behind developmentally for a while - but not forever.

Here are some of the symptoms a newborn might experience. These symptoms usually occur within the first few hours of life but can take a week or two to show up:

• poor or bluish skin color
• cold hands and feet
• lethargy
• poor pulse
• poor suckling and feeding
• pounding heart
• rapid breathing
• shortness of breath

The doctors should notice this themselves but just in case I put them here so you would know. Currently, Liam is still in the hospital to my knowledge he has never left the hospital since birth.He currently resides at Saint Francis in Tulsa but they want to get him transferred to Texas Children's Hospital where a pediatric cardiologist is waiting to treat him at a top of the line facility.

Please visit his facebook page at I Love Liam Lyon