MENU

Liam's Heart Journey


Liam was born September 30, 2009. He was diagnosed shortly after birth with a rare congenital heart defect called Tetralogy of Fallot (ToF) with Pulmonary Atresia (PA). His condition went undiagnosed in utero, as I had no complications and his heart defect was not detected on any of the sonograms. In fact, pregnancy was great. We had a little trouble at first with getting the correct gestational age, but after that, it was smooth sailing. We chose not to undergo any genetic testing or fetal tests. I do not regret not knowing in advance of his condition… looking back, I am certain my pregnancy and Liam’s birth went exactly according to God’s plan.

Liam's diagnosis
Because I went into labor one day shy of full term (can anyone say God’s perfect timing??) the NICU team was on stand by to make sure when Liam was born, that he was ok and didn’t have trouble with breathing (as it is common for white males to have underdeveloped lungs when born premature). They noticed right away he was not getting enough oxygen and had a slight heart murmur….they assured us they dealt with this all the time and thet Liam just needed to be monitored for awhile on oxygen, and he should be fine….About 5 hours later, we got the news that changed our world forever.

"Your child’s heart is broken and he has to have surgery to fix it."

My mind went into shock as they took me to see him before whisking him away to another hospital…I got to hold him while they hooked him up to all the monitors and prepared him for transport. But I felt alone, lost and scared.  Not knowing if I were to see him again, the took him away. There I was all alone in the hospital, no baby by my side like I had expected. My only comfort, besides that of my wonderful husband and family, was a small, stuffed monkey some friends of ours had picked up for us at the gift shop. Little did they know how “monkey” would help me cope, sleeping skin-to-skin with me in the hospital and at home, as Liam should have been. Monkey has thus been there with us and for us from the beginning….

Liam underwent his first open heart surgery, to place a BT Shunt, when he was 5 days old. We were in the NICU for 23 days…released on my original due date, October 22.    His second heart surgery was June 3, 2010. This was our “big” surgery, as it lasted about 8-9 hours and repaired his heart so that in essence, it would function as a “normal” heart. They closed the hole between his left and right ventricles and placed a pulmonary conduit and valve, where he did not have one. They also removed the BT Shunt they placed during his first surgery. Our PICU stay this time was 15 days, as Liam had some issues with extubation. He had two unsuccessful attempts at extubation before the third one was successful. This surgery was hard on all of us, we dealt with a collapsed lung, weaning off narcotic drugs and low oxygenation. It took Liam a little longer to recover from this surgery than his first.

On October 26 of 2010 we again received some devastating news.  Unfortunately the pulmonary conduit they placed just a few months prior did not hold up.  The doctor said Liam's body seemed to have "rejected" the homograft conduit and it eventually shrank to about 1/8 it's original size. Because of the high pressures moving through the smaller opening, the valve completely deteriorated.   This was an unexpected bump on the road to recovery and led us to another heart cath and open heart surgery on December 29, 2010 to replace the failing conduit with a new bovine conduit.  Thankfully and prayerfully, the surgery went very smoothly.  No complications arose and Liam was discharged 4 days after surgery.

We were also thankful that the surgeon was able to place a much larger conduit than originally expected.   This means that we can hopefully wait even longer to have the next surgery down the road.  The conduit Liam currently has should last until he is 7 or 8 years old.  They will then need to replace the conduit to a bigger size to last into adulthood and beyond.

Although Liam has recovered well heart-wise from his surgeries, we dealt with some feeding issues that started shortly after his first surgery.  Liam went home from his first surgery on an NG feeding tube and 4 months later had to have a g-tube placed because of continuing aspiration issues that stemmed from a paralyzed vocal chord from surgery. We were lucky that he tolerated feedings fairly well, and we were able to keep him on a “normal” feeding schedule. I pumped BM for him the first 5 months, and we then switched to formula about the time he was approved to start solid foods. That was a milestone day for us, as we were finally able to start feeding our baby by mouth!  We slowly weaned him off the tube formula to eating more solids and drinking thickened liquids.   He officially weaned off the g-tube in April of 2011 and we removed it in February of 2012.

Liam is a perfect little boy…7 years old and thriving. He is going non-stop, happy, healthy and loving life right now. I can honestly say, I wouldn’t wish my life to be any different. Yes, it is hard. Do we struggle – of course. Yes, I have been on the brink of insanity, depression and extreme fatigue. But I wouldn’t change a thing. Knowing the kind of love and miracles we have experienced, Liam has truly brought life to our lives. He brought God closer to me than I ever imagined He could get, and the love of a parent’s heart that only a mother or father could know. Liam's journey with his CHD will never end. He will have to deal with the effects of his condition each and every day of his life. We have found hope and can truly say we are blessed to have been chosen to walk this journey with him as his parents. Liam is our inspiration; his courage and strength amaze us each day - He is our JOY!





It has been a roller coaster of a ride for us, but our faith in the Lord has carried us through. We have experienced God on a whole new level, as his miracles, faithfulness and sacrificial love have shown themselves to us each and every day through Liam’s journey, in unbelievably amazing ways. Our blog is a testament to a loving and merciful God. He is the source of our strength, hope and peace...for Jesus has been there before, and has been here with us every step of the way.



5 comments :

  1. My son Maccoy was born July 2009 with Tetralogy of Fallot. He had his full repair on April 14th 2010 and will also need his pulmonary valve replaced eventually. Just thought I would say hello!

    Melissa

    ReplyDelete
  2. These pictures are soooo adorable! Thanks for sharing your story.

    ReplyDelete
  3. Hello Johnson family,

    I just came upon your blog and am so glad I did.

    When we first found out that our baby girl had a severe congenital heart defect, the pediatric cardiologist instructed me NOT to google heart defects. I know he was just trying to protect me from worrying, but that advice really wasn't the best.

    Ten months after baby Gracie's birth, I AM JUST NOW FINDING THE HEART COMMUNITY THAT EXISTS OUT HERE. Thanks for your blog and for the hope in Christ that you express!

    ReplyDelete
  4. I am new to your blog, but already I am touched by your story. I am a 17 year old congenital heart disease survivor, and to have the privilege to get to know another heart warrior is a blessing. I am just beginning my journey into the heart community, but already I am so grateful for the support that exists out there. Sending much love and many prayers your way. Love, Liz.

    ReplyDelete
  5. He is deff one strong baby boy !(:

    ReplyDelete

Comments