I planned my pregnancy for 2018, and was over seven weeks pregnant by March that year. I maintained monthly visits to the hospital to see my gynecologist for my regular check-ups. Technical reports of the obstetric ultrasound conducted on July 25 was the last time I got to hear that my baby was doing well.
My next visit to the hospital was earlier than expected because it seemed that my baby was not moving frequently and may even have stopped moving, which obviously made me feel very worried. On August 21 I rushed to the hospital where I had been having my regular check-ups. The doctors informed me that they were struggling to find the heartbeat because the baby was smaller than average.
Due to this and various other reasons, the doctors diagnosed that this was a case of IUGR(Intrauterine growth retardation). Babies born under such conditions do not grow properly and are expected to have low birth weight. According to the doctors, although I was 32 weeks pregnant, it seemed that the baby’s growth had stagnated at around 26 – 28 weeks.
After providing treatment which included a high protein diet, and keeping me under observation for more than a week, the doctors decided to do an ultrasound test to check the baby’s growth. The ultrasound report showed that compared to the ultrasound from the previous month, my baby’s weight had decreased. Previously, I did my ultrasound at a clinic closer to my home and took the report to the hospital for my check-up. This time, however, as I was already in the hospital, I did my ultrasound scan there. Noticing a difference in the baby’s weight, I was a little hesitant to accept that everything was normal as they said and I asked the doctors if I could retake the ultrasound test at my regular clinic just to reconfirm that everything was fine. The doctors had to follow hospital protocols and made me sign a paper agreeing to clear the hospital of all liabilities, and to go to the clinic at my own risk.
My motherly intuition pushed me to get a second opinion on the ultrasound report to make sure everything was okay. The next day my husband took me to the clinic and, contrary to the hospital report, a Doppler scan report suggested uteroplacental insufficiency. I did not know what this meant, and the radiologist at the clinic explained that blood flow to the placenta was compromised (decreased diastolic flow) which could have led to IUGR. The clinic doctor said that I may need an operation within a week.
I couldn’t understand how there could be such drastically different results in two different professional centers within a day. Based on the results of my initiative to seek a second opinion ‘at my own risk’, the doctors decided to do a caesarian section as an emergency measure. I was extremely nervous and unprepared, mentally or otherwise, for an operation. I had eaten half an hour earlier, and ended up vomiting during the operation. I then gave birth to a premature baby weighing 1.2 kg.
He was kept in PICU (Pediatric Intensive Care Unit) for 14 days and, looking back, I never understood why they discharged him after 14 days. The next week we went to another doctor for a second opinion, as our baby was crying constantly which seemed abnormal.
We later found out that he had a condition called hydrocephalus and meningitis. Hydrocephalus is a condition in which an accumulation of cerebrospinal fluid (CSF) occurs within the brain. It is also known as water in the brain.
My baby is now two years and nine months old, and he has gone through 14 surgeries/procedures within his first year alone. He is living with a ventriculoperitoneal shunt (VP), used for releasing the head pressure caused by hydrocephalus. Along with that, he had a hernia operation, both groin and umbilical, when he was four months old. Because of his complexity in the brain and the damage that happened to his brain at an early age, he is also diagnosed with cerebral palsy (CP). He is not able to hold his head straight, look properly, he does not move his hands and legs, and he cannot speak.
Having gone through such a horrible mental and physical experience, I sincerely wish I could do something to prevent others from going through anything even close.
Till today, I still have doubts on the exact cause of my baby’s condition. We have consulted several doctors but never received convincing answers. I still don’t know whether the treatment we initially received was the best and correct treatment and why it didn’t work. The hospital also never offered any explanation about why the ultrasound in their hospital missed such an important indicator. I wish I knew what exactly to advise, but I am only left with unanswered questions. I am still seeking answers and I need help on so many things including finding the right therapists for children with cerebral palsy.
I also hope these questions will be useful for all mothers, parents, and doctors to think about and try and find the answers to, which may help everyone make the right decisions.
- Why wasn’t IUGR diagnosed earlier during the scheduled visits?
- Could IUGR have been prevented?
- What causes reduced umbilical flow?
- Why wasn’t IUGR identified in the hospital USG report?
- What if we hadn’t taken a second opinion on the USG report?
- Why wasn’t I informed about all this during my hospital stay?
- Why was my baby discharged early?
- Why wasn’t hydrocephalus diagnosed early?
There still are thousands of questions for which we haven’t received concrete answers – we can do nothing but acknowledge our past and hope that new parents learn something from our experience.
Something that can never be emphasized enough is how important it is to have good communication between the team of doctors, technicians, and parents. Never hesitate to ask questions, prepare questions in advance, and make sure there aren’t any doubts in your mind. It is always better to be well aware and informed and to get second opinions on consultations and reports, at the end of it all it is about you and your baby.
