Lianah: 5 Hearts, 7 Days
“My only prayer is to have my baby well.” -Robinah, Lianah’s Mother
Lianah’s mom has never been out of Africa, or even Uganda, but she is ready with her brand-new passport. The prospect of traveling outside her country is a frightening one, but Robinah is ready and willing.
Her daughter, Lianah, has a very fragile heart. She just turned one, but at 14.5 pounds, she simply is not gaining enough weight. Her breathing is heavy and labored. She’s in urgent need of surgery.
Robinah is very worried and will gratefully travel anywhere to help her daughter. Anything for her baby girl. She and her husband cannot find the help they need in Uganda and must travel abroad to have their daughter’s multiple, complex heart defects repaired. They can afford neither the travel nor the medical costs.
Just after birth, Lianah was diagnosed with Down Syndrome. It is common for congenital birth defects to appear in conjunction with this condition, so doctors told Robinah that her baby would need more testing.
Soon after came the diagnosis of three life-threatening heart defects:
Ventricular Septal Defect (VSD) — Lianah has a hole in her heart, in the wall (septum) that separates the heart’s lower chambers (ventricles) and allows blood to pass from the left to the right side of her heart.
Patent Ductus Arteriosus (PDA) — Lianah’s ductus arteriosus failed to close after birth. As a result, oxygenated blood flows back to her lungs by flowing from her aorta, which has a higher pressure, to her pulmonary artery.
Patent Foramen Ovale (PFO) — This is an opening between the upper two chambers of her heart that failed to close after birth.
Lianah has a very sick heart.
Thankfully, her family happens to be neighbors with another family whose lives were impacted by Love Without Boundaries. Their daughter, Verena, received LWB funding for a life-saving surgery of her own this past year. Verena’s mom’s testimony of healing offered Robinah some much-needed hope.
After the connection was made and the story told, LWB staff quickly determined that this was another family badly in need of a helping hand and is looking into treatment options. With such a complex heart, we can only hope that Lilanah will remain operable.
When we met Robinah, she sat before us with great dignity, dressed in a red and blue traditional dress. Out of ceremony, honor, and respect, Ugandan women often dress in traditional wear to special events, such as parties and introductions. Even with very little money, and though most only have one such dress for many years, women attach great significance to dressing with proper respect.
Robinah explained how hard she is working to help Lianah gain weight. Her baby girl loves to eat matoke, a dish of mashed plantains, and ugali, a porridge, but she tires quickly and eats slowly. Due to her heart defect, Lianah needs extra calories to maintain her weight and grow, so Love Without Boundaries has stepped in with nutritional support.
Lianah’s father lost a leg in an accident last year and is unable to work. Caring for a sick child has made it difficult for her mother to work as well, so this family has no possible means to pay for the medical care Lianah needs.
Robinah told us she is “praying and praying” to travel soon for Lianah’s heart surgery. Their passports are now ready and waiting to be used.
As her mother shared about her sick heart, Lianah sat smiling widely, wrapped safely in her arms, wearing a little white dress and pink socks.
We, too, can wrap Lianah in love. Please consider giving to help answer those prayers for surgery.
This week’s guest blogs are written by Rebecca Radicchi, author and adoptive mom