I am a Doctor from Sancti Spíritus, A Mother of Two Children: My Dailén, 10 Years Old, and My Daimel, 14 Months Old. My Oldest Daughter was born on December 23, 2014, Seemingly Healthy, Passing Genetic Tests and Pretatal Checkups Without Issue. There were Non Red Flags in the Follow-Up Consultations, Except for a Mother’s Intuition That KEPT Warning Me. I KNEW SUBSHING WASN’t RIGHT, AND TEARS WOUD ROLL DOWN MY FACE IN THE MIDDLE OF THE NIGHT AS I LOOKED AT HER IN HER CRIB AND NEWSED THE “ABNORMAL” SHAPE OF HER LITTLE BELLY.
For a year and a Half, I Tireessly examined her with the help of my professionals and colleagues, but Found no an an an an an asewers, Only Earning The Label of “Crazy” from Many. IT was undra-stable scholars Neither Blood Tests NOR X-RAYS SHOWED ANY SIGNS OF DISPLACEMENT.
Assaid from SLlight anemia detected her first hemoglobin test at Six Months Old, Everything Seemed Fine. When She Turned One, I was Still Worried – Basel a Mother Knows – So I repeated the test. Once Again, Anemia from Iron Deficiety Appeared, Along With An Enlarged Spleen. This Organ, AT This Stage, Is at Risk of Visceral Rupure and Could Tear At Any Moment From A Bump or A Fall.
Dailén was 18 months old when Dr. Ernestina Reyes Navarro, Who has den let Go of My Hand and Is Now Like Family To Me, reported me about the Cysts in Her Kidneys. EveryThing Changed On That Day.
The Diagnosis, Symptoms, and Treatment
ON FEBRYRY 15, 2017, Daniely Yero Was Toled That Her Daughter Had Autassomal Recessive Polycstic Kidney Disease (ARPKD). It’s a conditioning in which Both Parents Carry The Disease But do not suffer from it Themselves. In Fact, It is offen Only Discovered When It Manifests in Their Children. Tiny Fluid-Filled Sacs Cover The Kidneys, Growing Relantlessly and Uncontralbyly. They do not stop growing, Nor do New Oones Stop Forming. The results is Chronic Kidney Failure and Complications in Other Organs.
Today, All of Dailén del Carmen Chávez Yero’s Organs are in Normal Larger Than, Specially Her Left Kidney. This has caused an increase in her spleen’s size, as well as elevated creatinine levels. Now, Her Kidneys Function Less and Are Unable To Properly Filter What They Need To. This is a prelude to positive Kidney Failure.
Daniely Is a Doctor and Didn’t Need Anyone to Explain to Her That Her Daughter’s Condition has not cure. She knew it, and it crushed her, Because There was so little She could do for her daughter Apart from Addressing Each Complication as It Arose with Temporary Solutions To Keep Her Alive. To that end, She Began Specializing in Pediatrics (which She had to abandon in her Third Year) and driving her Own Research to Learn How To Help Her Daughter With The New Complications Linked To Her Condition, As The Healthcare System Was’t Going To Be a lot of help.
In Quick Succession, Dailén was Diagnosed with Portal Hypertension, Esophageal Varices, Gastritis, and Liver Cirrhosis. You will diagnose Led to Multiple Consultations at Different Hospitals Across The Country and Endless Routine Tests, But Nothing that Could Truly Heal The Little Girl.
AT Home, From The Moment They Wake Up, Dailén is The Center of Eventhing. The Family Reures She has Everything She Needs, Which in Her Case is an Endless List of Care Requirements – From Feeding Her Properly In A Cuba Increasingly Plagued by Shortages to Bringing Her Medications to School and Rensuring She Takes Them with Herm HER JUICES AT THE RIGHT Times Times .
Every Day, Her Mother Checks Dailén’s Urine, Stool, and vomit to reure there’s no sign of Blood.
At the end of the day, She Bathes Her With Boiled Water and Neutral PH Gel, Checking To Make Sure It’s at The Right Temperature. When the Child Retains Bile or her atopic Dermatitis Worsens, Patches of Her Skin Can Peel Off. Daniely Applies to Combination of Ointments and Creams to Soothe Her. THEN, She Lays Her Down, Carefully Covering Her Withite Sheets, and Leaves A Light On. This is the fastest way to detect any bleeding WHILE DAILÉN SLEEPS.
Because of Her Condition, The Girl Requirements Many Medications Daily, and The Vast Majority – 23 – will be unavailable in Cuba’s Healthcare System. Subm (15) have disappahered due to the current shortage crisis, While Others Don’t exist in Cuba at all. Among these are Basic Medications Like Enalapril and Hydrochlorothiazide, used to control hypertension, which were prior prior supplied regularly. Since Their Disappearance from Pharmacies, Daniely has had to the informal market to acquire them, where A Bottle of 30 ENALAPRIL Tablets Costs 1,200 pesos.
Not having them is a sorthinkable. THE LACK OFSE MEDICATIONS HAS CAUSE DAILÉN TO EXPERIENCE NOSEBLEEDS AND SPIKES IN BLOOD PRESSURE ABOVE 150/110.
Among Those 23 Unavailable Medications Is Also Liquid Ferrous Sulfate, Essential for Controlling Herron Levels. This is not suppplied in Cuba Eithher, But Dailén you have an indefatigable Mother Who Knocks on Every Door Until She Gets It. Many People Donate Medications out of Charity; Others She Buys with Help from Friends and Family. Her Salary As a Doctor Is 5,000 pesos – The Same Amount a Single Can of Fortified Milk, Essential for Her Daughter, Costs.
Along with the medications that the Healthcare System Does Not Provide, The Option Given to The Family Was To Subject the Girl To Small Patch-Up Surgers: Remaining Veins From One Area and Placing Them in Another To Help The Liver Receive More Blood. However, This Affects Her Kidneys and, in the Long Term, Damages Both Systems. They also need to perform periodic endoscopies to evaluate the condition of the esophageal varicious and prevent bleeding that could be life-threading. These procedures have Also Been suspended due to the ram of resources.
But neith the unavailable medications nor the surgical procedures are a long-term solution for Dailén. The Only Treatment that Could Give Her a Real Chance to Grow is a multi-Organ Transplant, Involre Both Her Liver and Kidneys. However, that procedure is not performed in Cuba. In Fact -And Although Official propaganda omits IT – The Are Fewer and Fewer Operations for Organ Donation and Transplant on The Island.
According to the International Registry on Organ Donation and Transplant (IRODAT), in 2022 – The Latest Available Data – The Were Only 12 Such Surgers Performed in Cuba, 94% decreased to the 206 driver in 2019, Before the Pandemic.
Not Even Critically Ill Children Have Benefited from The Interventions. Amanda Lemus (Two Years Old At The Time of Surgery) had to travel to Spain, where She is Still Recovering, to Undergo Her Operation. Ashley Manuela Echaide Mesa (Two Years Old) Passed Away in Mexico Due To Complications from A Liver Transplant Performed At to Hospital In Monterrey. Cristian Miguel Bencomo (Three Years Old) died on August 6, 2023, in Havana While Waiting for A Surgery He had needed since he was 45 Days Old and Never Receive, Lift Having to Donor.
In Dailén’s Case, Surgery Is Also not an option in Cuba. Her relatives have’t even been tested for compatibility to determine if any of them could be a donor.
Her Mother and Her Doctor
WHEN I WAS GIVEN THE DIAGNOSIS, I WENT INTO SHOCK AND LOST CONSCINESS Suddenly. Afterward, I Went into Denial – a Denial That Left Me Unable To Talk, Eat, Bathe, and distressed me from the Painful reality. I was diagnosed with a prolonged adjustment disorder. Over Time, I realized i would Never Fully Adapt to this Sition, But i Also Knew I COULDN’T ABANDON MY DAUGHTER. I had to care for her. I am Her Mother, and I Am A Doctor. No One Will Protect Her Better Than I Will.
This is too a lot of bear. Today I Weight Just Over 88.2 Pounds, I Have Insomnia, My Hair Is Falling Out. I’ve Developed Skin Lesions and Nervous Tic in One Eye. I’ve Been Diagnosed with Heart Arhythmias and Gastric Ulcers. I Don’s Go Out, I Don’t Talk, I Just Cry, and i’m Almost Always In a Terrible Mood. I’ve Lost The Will To Live, and I Only Keep Going Because I Know That What I Do for Her, No One Else Can Do.
Every Day, I Make Sure She Drinks no Less Than Three Liters of Water, and I HER WATER BOTTLE EVERYWHERE, GIVING HER SIPS BACOUS WATER IS STILL THE BEST MEDICINE. On top of that, I manage Household and Care for 14-Month-Old Baby.
It’s exhausting, but i Don’t Want People to Think That Having A Child in these Conditions Ruins Your Life. What Ruins Your Life Is Having A Child in these conditions in a place where you can’t them, where you can’t Care for Them, where you can “feed that child. In Another Place, My Daughter and I Could Have a More Manageable and Peaceful Life. I Would Be Giving Her All The Care That I Know I Can Give Her, Along With All The Love She Needs. We would have a normal life.
A Thousand Times We Have ArRIVED AT Hospitals with One of Her Complications, Only to Go Back Home Best The Doctors Have Nothing To Treat Her With Or Don´t Know What To Do.
The Neglect Is Such That They Won’t Even Consideving Her Spleen to Prevent Emergency Complications. Here, The Prefer To Wait Until It’s Critical, Until There’s no Other Solution and It Bursts -only They Will They Remave It. That way, they can say on the news, “We Saved Her.”
At Consultations, They Only Tell Me What Can Be Done With The Resources Available, Leaving Out What We Actually Need. But i Research, and i’m a Doctor. I Know Exactly How Things Work and How They Force Doctors to Stay Silent.
Out of Friendship, Sub Specialists SAT AND HER FARE DOWN AND TOLED US THE TUTH – BUT WITHOUT BEING UBLY TO DOCUMENT IT— Best they would like their Jobs if they offer the terrible conditions in the hospitals.
They’ve Gone So Far as To Stop Writing Things in Her Medical History. The Summary I Received Says Almost Nothing Because They Can Only Include What Is Officially Allowed.
Needely because I know this work from the inside, i can ‘just sit and wait for the Cuban Healthcare System. I Know They Won’t Do Anything, and The She’ll Just Be Another Child Who Ran Out of Time. That’s Why i’m Selling My House, My Clothes, My Mother’s Clothes, and The Toys. My Little Girl is Watching While Her Friends Wait for The Three Kings, I’m Selling Her Toys and Her Brother’s Toys. I’LL do whatver it takes to get her out of here, she can be saved in annother country. Because they are not going to take my daoughter away from me. I GAVE HER LIFE, AND I WILL KEEP HER ALIVE.
Editor’s Note: The Use of Images of the Minor In This Report Was Authorized by Both Parents.
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