Dr. Madara,
From 2005 to 2014, I gave birth to four beautiful children and lost three of them due to a rare disease known as lymphangiectasia which is a rare lymphatic disease. Imani, our first-born showed early signs of complications, and only lived for six months. Most of our time with her was spent in hospitals, while doctors struggled to figure out her diagnosis. At first, they believed she had pneumonia because of her breathing problems, but later she was diagnosed with Pulmonary Lymphangiectasia. She struggled to breathe because of all of the fluid inside and around her lungs, and her body was swollen from all of the lymphedema in her stomach and limbs as well.
During Imani’s short life she was connected to breathing tubes, feeding tubes, monitors, and other medical equipment. I remember feeling tortured as I looked at so many tubes protruding from my newborn baby’s body. Although the doctors predicted a short life for her, my husband and I held on to hope for dear life, until she died in the hospital during the summer of 2005. We were devastated, but somehow still managed to function through life.
Shortly after Imani’s passing, I found out I was pregnant again. Fearful, but hopeful and faithful I prayed for a healthy pregnancy, but early on in the pregnancy during a sonogram, the doctors detected extra fluid and predicted complications. Although I ate healthily, I gained a significant amount of weight. I fought through the pregnancy, remaining as positive as I possibly could.
Miles was born on December 23, 2005 and died one day later on Christmas Eve. I delivered him prematurely, several months before the due date, and he had so much fluid throughout his entire body, he was taken immediately to the NICU, for close monitoring and was immediately put on life support. I remember the doctor’s telling us that he most likely wouldn’t live past a few days and early the next morning he was pronounced dead. My husband and I held our son’s limp body, holding on to what was and what would never be – all at the same time.
Shortly thereafter, we checked out of the hospital and headed home. This knocked my husband and me off of our feet and the little hope and faith we had left quickly vanished. Our new reality was empty, but we were left with two choices – to give up on life or to slowly pick up the pieces once again. We chose the latter.
Fast forward… and in 2007 and 2008 I gave birth to two more boys. Elijah, was born healthy and whole and today is 14 years old. He is the joy and light of our lives. Solomon was born afterward and showed signs of lymphedema; however, my husband and I had done such an enormous amount of research we were able to manage his lymphedema with compression bandages, therapy, and a low fat-high protein diet. He was living a good life and we were so happy that although he suffered through some health challenges, for the most part, we had everything under control.
We were a family supporting and loving each other, cherishing the moments, and, most importantly our boys had each other. They went to school together, played football, soccer, and golf together….and we were all happy. Then one day we found out he had an infection….and several days later, just like that he passed away. Those suffering from lymphatic disorders are also prone to infections and although Solomon had experienced several minor infections previously, we were able to treat them with antibiotics and he recovered. This time around he didn’t show any signs that he was suffering from an infection until the very end, and once we saw signs it was too late and our Solomon was gone, just like that.
Once again our lives were turned upside down, but this time we had our only son Elijah with us. This time we didn’t have the luxury of lying in our pain, we had to pick up the pieces, if not for us – for Elijah. We were fortunate enough to have a loving family around us and a supportive community that protected us from our immense pain. Although our faith was tested yet again this time we decided we had to stop and reflect in order for us to continue. We both took some time off from work, my parents helped take care of Elijah, and one step at a time we nursed each other back to life.
Years later I wrote a book Sunrise in the Darkness and we started a foundation, Three Little Birds, in honor of our 3 children – Imani, Miles, and Solomon. Elijah, our one and only living son has utilized his love for the sport of golf, as a vehicle to also heal from his loss. This foundation was developed to help grow the game of golf and give back to the community around us. In an effort to fight for those suffering with rare lymphatic disorders, we spend our own personal time every year fighting and lobbying on Capitol Hill to have the Lymphedema Treatment Act passed. This is an Act which (once passed) will improve health care coverage for the treatment of lymphedema so that medical supplies needed to treat this disease will be covered. Because we suffered so much loss due to this horrific disease, It is our life mission to help those, who live with these rare lymphatic disorders in order to improve their quality of life. We learned during our time of suffering that life is about what you do with your own pain to help heal the pain of others. This very simple concept has given us life and has given our family the purpose and drive to help others. Our children’s lives also live on through the commitment we dedicate to serving others, and now our purpose is now clear.
Sincerely, Tajuana & Scott Selby
Founders of Three Little Birds Foundation (Certified - 501c3)
Send your own story directly to Dr. James Madara, AMA CEO & Executive Vice President at james.madara@ama-assn.org. Please copy LE&RN on your email (LERN@LymphaticNetwork.org).