“Each day is indeed a blessing.”
Natasha Chipasha Bulaya, Trisomy 18, 7/15/2011, Providence RI
I was 39 years old when I discovered that I was pregnant. Due to my advanced age I was asked to undergo a series of tests to figure out whether there were any signs to suggest the presence of any form of down syndrome in the baby . At 18 weeks I was given an appointment to that effect but since I was in the process of changing states I was unable to fulfill it until I moved to Rhode Island .After a few scans , I was informed that I was carrying a baby girl but I still needed further tests to determine the presence of down syndrome. I however asked whether there were any remedies or interventions in the event that it was discovered that my baby had any down syndrome. I was informed that the only known solution would be to recommend for the termination of the pregnancy. Since I was too excited about the gender of the baby which I had wished for all my life, I suggested not to undergo the test until the baby was born . Natasha was born on July 15 , 2011 and four days after her birth I was slapped with the sad news that she had T18.Agenetic condition which was incompatible with life. Which meant that she could die any time and that 90% of the kids born with this condition do not live beyond their first birth day .I was told that since the hospital could not do anything about it, I should just take my baby home so that she could go and die in my loving arms. I objected to take her home since she had some other health problems too. They kept us in hospital for another 2 moths. After a long struggle they agreed to a hear surgery which was successfully done at Boston .After the surgery, they still insisted that she would not live long , I should just take her home or surrender her to a facility for Special Needs children. I chose to bring her home .At 10 months while at home one night, she just stopped breathing. It was a heart breaking experience and very devastating. I called emergency who arrived within 10 minutes and we rushed her to Hasbro Hospital where I was told that she was actually brain dead though they would put her on life support for 10 days after which they would remove the life support if she did not regain her consciousness so that we could just let her go. I cried and prayed relentlessly but gathered enough courage and strength and put everything in the hands of the creator. She remained in coma for 2 weeks after which I was asked to make burial arrangements , which I did and on 6/23/2012 at 10.00 am eastern time, my baby was taken off the life support and I was advised to hold her so that she could die in my loving arms since according to the doctor who was supervising the whole episode, the longest my baby would remain alive without life support was 30 minutes. To every ones dismay, 30 minutes turned into 2 hours and the baby was l gasping for breath but still alive .They later extended it to 12 hours, then 24 hours and finally two days. But after 24 hours I convinced them to put her back on life support since I could not stand watching my baby suffer as she gasped for breath with a groan. We spent another agonizing 1 month in hospital, then we were sent home with the same song that I should bring her home to die in my loving arms .But just after 4 days , we were back in hospital and that is when I asked for advice from other Trisomy moms who recommended that I should ask the Hospital to insert a tracheostomy to help with her breathing. She was given a trach when she was 1 year and 2 moths and we again remained in hospital for another traumatizing one month and after that she has been relatively stable but she still remains on a vent. She is now 2 years old. Each day is indeed a blessing.
Mary Bulaya, email@example.com