Hydrocephalus – not a death sentence
Imagine this – You’ve unexpectedly found out that you and your husband are expecting and just when you’ve wrapped your mind around the idea of adding another little one to the team, you hear those dreaded words from your doctor – “There’s a problem.”
At seven months pregnant, my doctor told me that there was excessive fluid in my unborn baby’s brain and he was diagnosed with a condition called Hydrocephalus. However, what struck me was, although he referred us to the Port of Spain General Hospital, he also strongly recommended that we seek immediate medical attention in the United States to give my baby the best chance of life. As we are not a family of means, I decided to visit the POSGH to treat with my situation and then understood why my doctor recommended that I travel abroard. On a positive note, when the nurses at the POSGH clinic read my doctor’s referral papers they sent me almost immediately to see a doctor, but on the other hand, no patient, after giving a urine sample, should be asked to wash out the cup in a sink used to wash hands and return it for future use. That is absolutely unsanitary.
As I got upstairs, someone took my information and then they attempted to monitor the baby’s heart rate. The most apologetic attendant tried numerous times to get the heart monitor to work and just by the look of it, one can tell that this heart monitor was aged and in need of repair. When I spoke with a doctor, he invited me to have a seat and asked if I understood the situation in which I found myself. I explained that my doctor did explain it to me but I would like to hear what he had to say. This doctor looked at me, seven months pregnant and said “Well most women choose to abort the pregnancy” and then there was a moment of silence. I had to explain to the goodly doctor that termination is not an option for me and I also had to ask whether terminations are done for women so advanced in pregnancy. While I am no doctor I always thought that terminations in late pregnancy pose a very serious risk to the mother should she decide that that was what she wanted to do. Nonetheless, the good doctor explained that he had never encountered hydrocephalus post 5 months gestation so he was unable to answer my question. I have shared this experience to say three things:
1. I have learnt that hydrocephalus if left untreated can be fatal, so time is of the essence for someone with this condition. However, it is my humble view that Hydrocephalus is not a death sentence since after doing research I am amazed at the number of children and adults who are living happy and healthy lives after getting proper treatment for hydrocephalus; so there is hope! Much more awareness is needed for this very serious condition.
2. Much greater attention is needed to take care of our pregnant women and their children in our nation’s hospitals. Our public hospitals should be equipped with the proper heart monitors and all other necessary tools to ensure a safe pregnancy. Will it really cost too much money to supply disposal containers for urine samples? Or even if the policy is to reuse the containers shouldn’t there be clear guidelines as to how the nursing staff (not the patients) should clean them?
3. No doctor should even suggest terminating a pregnancy with a baby with hydrocephalus without first explaining all the options available to save that child’s life.
I did go to the United States to seek treatment, and at 3 days old, my son had surgery to insert a device called a shunt into his brain. I was told that the shunt is a device that is surgically inserted into the brain to drain the excess fluid and that it is the most common method to treat hydrocephalus. By the grace of God my “hydro-hero” is meeting his milestones and doing very well so far. I encourage anyone who has positive experiences with this condition to spread the word so hopefully more lives can be saved and fewer pregnancies will be needlessly terminated.
Huge shout out and thank you to Ceronne Bayley who allowed us to re-post this amazing article on mytrinichile.com
Original Article: https://www.linkedin.com/pulse/hydrocephalus-death-sentence-ceronne-bayley-mba-llb/
Author: Ceronne Bayley Co-founder / Corporate Director / Company Secretary
