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April 6th, 2017
Editor’s Note: At the time of publication, the Green family had to say goodbye to their sweet girl. With the family’s permission, we share their story and honor the memory of baby Zylah.
Zamiyah, Zariha, and Zaliyah know the Ronald McDonald House as well as they know their own home. The girls gleefully trip over one another to reach the playroom first and grin ear–to-ear at the mention of the Magic Room. They’ll chat with anyone who asks a question and sometimes they don’t even wait for an opening. And if you ask them about their favorite part of the House, all three will agree with mom and dad: getting to see baby Zylah every day.
These little girls will tell you their sister has “a broken heart.” Porchae found out something was wrong at her 20-week ultrasound. The baby had a congenital heart defect (CHD) and would need immediate surgery after birth. In fact, that initial heart surgery was to be one of three anticipated surgeries to repair the defect and delay the need for a transplant. There was also an additional challenge – Ryan, a military husband and father, was across the country at boot camp. With three busy girls under six at home that needed her attention and Ryan away, Porchae tried to find a balance between optimism and preparing herself for the possibility that they would not get to take this new baby home.
Zylah was born in August with a full head of hair and a blue tinge to her skin, but she was doing better than had been expected. Well enough to wait a few days before tackling the first surgery so she could grow as much as possible. However, along with CHD, Zylah has heterotaxy; her organs are not all where they should be. Her anatomy is so complicated that the three-part plan for surgeries was tossed-out when the first surgery was complete. Zylah was now a top-priority heart transplant candidate.
Over the last six months, the family has been waiting for a heart for Zylah, patiently working through each complication that arises. One such complication is aggressive antibodies. Like all babies, Zylah was born with antibodies from mom. These usually dissipate within the first few weeks after birth as a child builds their own immunity, but Zylah and Porchae’s shared antibodies had not gone down. These antibodies are very specific and cause a higher risk of rejection of a transplant organ. Combined with her newborn size and these antibodies, Zylah’s options as a transplant match were limited to 1 in 100. She has had two additional open-heart surgeries in the past few months to further open her pulmonary veins, fix her mitral valve, and route blood flow all in the hopes of buying more time. Most recently, they were able to do plasmapheresis during their last open heart surgery. Combined with her steady growth, this plasma exchange procedure allowed them to remove enough of the difficult antibodies in Zylah’s blood to open up new opportunities for transplant – they now have a 1 in 10 chance of finding a heart that is a viable match for Zylah.
Despite the infection that lingered from this last surgery and worries over kidney and liver function, these new odds have revived the Greens’ hope of finding a great match for Zylah. Until that day comes, the Green family continues to wait, traveling between their house and our House as much as the demands of daily life allow. “I don’t know what we would do if the Ronald McDonald House wasn’t here. You have no idea what you’re going into… the up and down emotions. The support- we have amazing friends that we have made here. This is our family for our daughters and for us when we are here.” Zylah’s sisters would also agree with mom and dad about that- as long as they can check on baby Zylah, as long as they can see that she is okay, then they are happy to head back to their RMHC family after each visit.