On January 4th, 2017, my aunt had her first beautiful baby girl, Maryam. Baby Maryam was born at 32 weeks and weighed 4 pounds. A few days after being born doctors discovered an intraventricular hemorrhage, where she was bleeding into the fluid filled areas in her brain. She was treated and kept at the hospital for several weeks until she was finally ready to go home to meet her family.
My immediate family and I live in Canada while my aunts, cousins, and grandmother live in Baku, Azerbaijan. We were all so ecstatic that the baby arrived, we were on video calls day and night so we could be a part of this new beginning anyway that we could. As I was still living away from home for school and only visiting on my days off, I didn't have the chance to keep seeing the baby everyday over video calls. After a few weeks of not seeing her, I had finally come home and called my aunt to see baby Maryam. It was then that I noticed that the size of her head looked abnormal, which to someone who sees her everyday, it was not as noticeable. My mom told my aunt, who immediately set up an appointment.
Up to this point, the doctor who saw Maryam for her newborn checkups has said that everything checks out fine...that is until he is asked to do a more thorough check up because my aunt voiced her concern about the size of her head. Unfortunately the health care provision in Baku is incomparable to what it is here, especially if you do not have the financial means to ensure that doctors do an exceptional job, which in our case, proved to be true.
At 3 months Maryam had a CAT scan which indicated that she had progressive hydrocephalus, where there is excessive amounts of fluid that accumulates in the brain. Of course there was no questions asked, the decision was made to immediately treat the condition as we are told. Unfortunately, once further tests were done, they showed that the fluid that has accumulated in the brain was infected and the recommended treatment, which was to insert a shunt, was too dangerous while the infection was present so she had to undergo 3 weeks of antibiotic treatment to get rid of the infection.
Every time my aunt took Baby Maryam for testing the test results took several weeks to come back, at this point the fluid in her brain continued to increase, she was already behind in her development due to this and the doctors continued to insist that there is no way they can rush the results. Seeing how long this was taking, our family put together some funds and my aunt and the baby flew out to Moscow to be treated at The Burdenko Neurosurgical Institute.
Baby Maryam was hospitalized for 2 weeks at this insistitute where they found that she had a fungal yeast infection in the fluid of the brain that was caused by the previous infection. Luckily my mom has a friend whose mother lives in Moscow and took my aunt and the baby in to stay with her for as long as needed, for which we couldn't be more thankful for her and her family for being so kind and generous. Being able to reside in Moscow makes it possible for treatments to be done immediately without waiting weeks on end for results to come back. Baby Maryam continued to take antibiotics for the post infection and once this was treated they were sent to the Institute of Emergency Children's Surgery and Traumatology in Moscow where doctors recommended that they first try an endoscopic third ventriculostomy to see if the fluid would begin passing on its own, as this was less invasive than inserting a shunt.
Up to this point the major treatment procedures had cost $6500 CAD, that is not including medicine, living, and transportation costs. Once the endoscopy was done the doctors in Moscow said that the liquid had slowly started passing on its own and that she is able to take Baby Maryam back home to Baku and monitor her head circumference and come back as soon as it starts to grow again.
Only a week after the procedure her head starting growing again and my aunt was on a flight back to Moscow where they were admitted once again at the Institute of Emergency Children's Surgery and Traumatology. Doctors discovered that the endoscopic procedure has failed and the fungal infection has come back. The doctors explained that this time the infection is worse and more invasive treatment needs to be done and the best course of action is to begin this immediately as the baby is significantly behind in development and before the fluid starts to impact her brain more severely.
The recommended treatment at this time is to insert a drainage system that will drain the fluid externally and periodically administer antibiotics directly into the accumulated fluid. Once the infection is gone the doctors will then instert a shunt in order for the fluid to regularly drain from the brain. The initial cost for the treament of the infection is $7900 CAD. Once the infection is gone the shunt placement will cost $8600. The doctors have explained that they can do as much as the funds allow and as a family we have been doing our best to pay little by little so that the treatments can continue.
We have been gathering money within the family as much as we can but as unexpected obstacles come up it becomes difficult to quickly gather the means that are needed to proceed with treatments. The doctors have explained that treatments need to be underway and must be continued in a timely manner in order to avoid severe brain damage, and in the absence of any sort of treatment, our beautiful baby girl could lose her life.
Gathering the funds will mean that the treatments and procedures can be underway without the fear that they may be stopped at any moment and whatever the doctors orders are, we can act on it without questioning its possibility.
All we want is to see Baby Maryam grow up to be the best version of herself, no matter what that may be and to know that we have done everything we could possibly do to give her the best possible childhood and life she can have. With the help of our family, friends and all the caring people who may stumble upon and take the time to read this campaign and simply have her in their thoughts, I know we can make that possible.
We only ask for what can be spared and even a simple share of this campaign can make a world of difference.
My heart goes out to anyone and everyone who has or is going through anything like this. We will get through it together.
- Alexandria West
- Mariana Milheiro
- Anna Akimova
- Firuza G
Organizer and beneficiary
#1 fundraising platform
More people start fundraisers on GoFundMe than on any other platform. Learn more
In the rare case something isn’t right, we will work with you to determine if misuse occurred. Learn more
Expert advice, 24/7
Contact us with your questions and we’ll answer, day or night. Learn more