May I introduce to you my Warrior Princess. She goes by the name Kaliyah, born December 16, 2023, at Boston MGH, in the care of two loving parents pleased to finally bring home our addition.
At home waiting for her arrival were four eager, contented siblings: her older sister (16) & three older brothers (12 , 11 & 5).
I felt complete, so precious and so pure all over again, and then my whole world turned upside down and inside out — a feeling I can\u2019t explain as a mother but am here today advocating for her in the best way possible.
On December 28th My Warrior Princess Kaliyah spiked a fever. I noticed some jaundice with pale stool, and I brought her back to MGH. They ran some tests and diagnosed Kaliyah with Biliary Atresia. It is rare but affects about 1 out of 15,000 babies in the (US).
Biliary Atresia only occurs in newborn infants and is a disease where the bile ducts become inflamed and blocked soon after birth causing bile, a fluid that is made in the liver (it breaks down fats into fatty acids that helps with digestion), to build up, rapidly destroying liver cells and causing cirrhosis and scarring of the liver.
The cause of this is still unknown. On April 16 , 2023, the day I found out I was expecting a baby girl, I was so gentle and careful with myself and everything I did \u2026 I ate my fruits; I drank gallons of water a day; I rested; I prayed and I took my time. But it\u2019s not preventable; it\u2019s not hereditary; and it\u2019s not caused by anything any expectant mother did or did not do.
It just so happened My Warrior Princess was that 1 in 15,000, and what she has endured in her short time here is any mother\u2019s worst nightmare and what made her the warrior she is today.
She got the kasai procedure where the surgeon removes the gallbladder and attaches the liver to the small intestine in place of the damaged bile ducts. This failed at around 3 months, leaving us with no options but a transplant.
Not only did the kasai fail, but due to her lack of weight gain, her arms and veins are so small that she\u2019s endured numerous failed attempts at IVs or they would just simply fall out. She\u2019s been through so many tests, examinations, x-rays, MRIs, CT scans, blood work, THREE blood transfusions, many sleepless nights, and days she couldn\u2019t eat anything per doctors order — just the IV giving her fluids and she\u2019s staring at me, crying, not understanding why I — as her caregiver since birth \u2013 am not feeding her. It\u2019s been a battle, and a lonely one, but we will continue to fight this battle together.
In and out the hospital (MGH), on our last visit something came over me — they birthed my baby and knew everything about her story because that\u2019s where I always went. They have been working with Kaliyah since the beginning, did arts and crafts with her, and always tried to make my stay as pleasant as possible. As my daughter\u2019s mother, advocate and guardian, I wanted a second opinion on everything, so I asked to be transferred to Children\u2019s Hospital.
On July 19, 2024, my daughter was transferred — we were both transferred through ambulance, to Children’s Hospital, where they ran a bunch of more tests, some MGH already did and some they didn\u2019t do at all. I felt ALL my hope come back. They tested me as a possible donor, and they gave me paper work to give to possible candidates to fill out. They got things going all in less than a week.
On July 25, 2024, she became active on the transplant list. Our stars are finally aligning. Her blood type is (B-) meaning anyone who is (B-\/+) or (O-\/+) can be a possible donor.
It\u2019s been a tough battle. Little does Kaliyah know she\u2019s actually been my strength. Watching her be such a warrior not only breaks me but strengthens me for her more and more every day. I want to also thank my family and friends and mom friends of children facing the same horror story. The littlest things matter right now, and you all been such a tremendous support group.
Kaliyah and myself are beyond grateful for everyone involved \u2026 from hospitals, to doctors, nurses, MAs, social workers, cafe workers, and even the custodians making sure her rooms were always tidy. We\u2019re tired, but we\u2019re fighting. So if I ever forget to say it, Thank You everyone for your kind help, words and support.\u00a0\u00a0\u00a0<\/p>\n\n\n\n
The Children\u2019s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation\u2019s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA\u2019s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.<\/p>\n","protected":false},"excerpt":{"rendered":"
May I introduce to you my Warrior Princess. She goes by the name Kaliyah, born December 16, 2023, at Boston MGH, in the care of two loving parents pleased to finally bring home our addition. At home waiting for her arrival were four eager, contented siblings: her older sister (16) & three older brothers (12 […]<\/p>\n","protected":false},"author":2,"featured_media":76,"parent":0,"menu_order":0,"comment_status":"open","ping_status":"closed","template":"","meta":{"_acf_changed":false,"footnotes":""},"class_list":["post-14","page","type-page","status-publish","has-post-thumbnail","hentry"],"acf":[],"yoast_head":"\n