Brenley has Hypoplastic Left Heart Syndrome with absent left ventricle. “Hypoplastic” means underdeveloped or incomplete. Many babies like Daniel with HLHS have a very small left ventricle. Brenley doesn’t have a left ventricle at all.
She also has Total Anomalous Pulmonary Vein Return (TAPVR). In a normal heart, four pulmonary veins (two on each side) bring oxygenated blood from the lungs back into the left atrium. All four of Brenley’s pulmonary veins empty into the right side of the heart instead.
Because of Brenley’s TAPVR, she has pulmonary vein stenosis. “Stenosis” means an abnormal narrowing. Three out of four of Brenley’s pulmonary veins–the blood vessels that bring oxygenated blood back to the heart so it can be pumped to the body–are completely blocked. She only has ONE remaining pulmonary vein.
After I found out about Daniel’s HLHS diagnosis at my 20-week ultrasound, I was reeling, trying to process the reality of Daniel’s condition. A few weeks after Daniel’s formal diagnosis at Memorial Hermann, I was getting my hair cut and highlighted with my awesome hair stylist Lauren. While there Lauren told me that one of her friends from high school has a baby girl with HLHS, too. She told me Belinda’s name and connected us on Facebook.
I’ll never forget how Belinda immediately answered my Facebook message and spent an hour on the phone with me, someone she had never met. She even sent Daniel a gift of long-sleeved, snap-in-front onesies. She knew how important “kimono style” onesies are to babies in the hospital. Belinda is amazing, and she inspired me to be a heart mom like her.
Brenley’s heart is very unique, and there is no known reason why any of this occurred. Her parents, Belinda and Brennen, found out about Brenley’s HLHS at their 20-week ultrasound.
The doctors didn’t realize how severe Brenley’s condition was at first. Brenley had her first open heart surgery (the Norwood) when she was two days old, and she spent seven weeks in the hospital after surgery. She got to come home for 2 months following surgery.
Before the second open heart surgery (the Glenn), babies have to undergo a heart cath procedure. The cardiologist measures the pressures in the lungs and heart. These pressures tell the doctors whether the baby is ready for the next surgery.
Imagine this– you have brought your beautiful baby girl home from the hospital, and you think things are going perfectly. She came through her first, biggest open heart surgery like a champ, and she is thriving at home. You go in for her heart cath as planned, and find out devastating news. BOTH of your baby’s pulmonary veins from the left lung are CLOSED, and the two remaining have severe narrowing.
Brenley had her Glenn surgery three days following her heart cath procedure. She got to come home after five weeks in the hospital.
Brenley was only home for two weeks before she had to go back to the hospital for fluid on her lungs. This began an arduous and devastating journey for the Parker family.
Brenley would remain inpatient from September 2017 until January 2018. She continued to accumulate fluid in and around her lungs, and another one of her two remaining pulmonary veins closed.
The doctors told Belinda and Brennen that there was nothing else they could do for Brenley. They called her condition “lethal.” With only one narrow pulmonary vein left, she was no longer a candidate for the Fontan or a transplant. After four months in the hospital, doctors sent Brenley home on hospice.
Belinda and Brennen never lost hope. They advocated for Brenley by sending her case out for second opinions. Texas Children’s Hospital (TCH) answered and said they “believed they could help her.”
The doctors at TCH placed a stent in her one remaining pulmonary vein. That procedure was over a year ago, and Brenley has been stable ever since. She has needed no further intervention! She is thriving at home. Miraculously she came off oxygen, she got rid of her feeding tube, she learned to crawl, and now she is walking.
Belinda says, “’I am reminded daily that no two children are the same and that miracles do exist. Seeing Brenley continue to beat this disease is probably the most rewarding thing that has ever happened in my life.”
The battle with CHD (congenital heart disease) is for life, and Brenley still has quite a journey ahead of her. I asked Belinda what keeps her going on difficult days. She says this: God. Her fight. My incredible family. I have cried out to God many times for Brenley, and I have felt him comfort me and get me through moments when I felt weak. But also, it’s an instinct to care for your child. When your child needs you, self care is set aside. You go into fight mode. When it’s all said and done you will look back and wonder how you did it, but guess what? You did it! I don’t know what her future holds as it is question whether or not she will qualify for her next surgery, the fontan… but I live everyday for that day. She’s thriving now, happy, healthy and full of life. When those times come we will handle it and fight like hell just like we did the first time. Until then we’ll be doing all the normal things and living every moment to its fullest!!!!
Belinda exemplifies the word Heart Mom, and Brenley is an amazing Heart Warrior. Please pray for this amazing family as they continue to overcome the odds and live in joy each day.
“What then shall we say to these things? If God is for us, who can be against us? Who shall separate us from the love of Christ? Shall tribulation, or distress, or persecution, or famine, or nakedness, or danger, or sword? No, in all these things we are more than conquerors through him who loved us” (Romans 8:31, 35, 37)
“Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand” (Isaiah 41:10)
“I can do all things through him who strengthens me” (Philippians 4:13)