Saturday, December 29, 2012

Special Baby Soffyah - Ventriculomegaly at Birth

Soffyah is a special baby born on 5th April 2011, placed immediately in Special Care Nursery right after birth, and went through MRI when she was 3 days old.

Baby Soffyah was diagnosed with fetal ventriculomegaly at 20 weeks during a prenatal checkup. The ultrasound technician, while scanning, kept asking me if the doctor said anything about the baby, and no, I was clueless for what was to come.

I was then sent for a more detailed scan where the doctor then confirmed the condition. But before the doctor told me about the condition, I was prepared for the worse, as I caught a glimpse of the scan showing a big liquid-filled space in my baby's head, where there was supposed to be brain tissues.

I googled and found some inspiring stories about ventriculomegaly babies, some of them are worse off than others. But there were some quotes I can never forget.

Special babies are given to special moms. Believe in your child, and have faith that he or she will be just fine. 

Ventriculomegaly babies, depending on the seriousness of the brain abnormality, can suffer from developmental delays - mental and physical, and are also at risk of death in early childhood.

Wild thoughts ran through my mind during those days when I was not sure what my baby will be like. Will she be able to walk, talk, or look like other normal babies? Will she be able to survive at all? I have lost my first child and I do not want to lose another one. I prayed hard that she will be fine, and I asked that God give me the strength to be a good mom to her. They were the scariest days of my pregnancy. I tried however to distract myself from thinking too much about it.

The doctor monitored the size of her head during the following pre-natal scans and it was certain that her head was bigger than normal. When she was born, I was thankful to see that her head looks pretty fine and in proportion to her little chubby body.

Post-delivery, she was taken immediately to the Special Care Nursery, where doctors and nurses took many tests and continued to monitor her condition. I was discharged from the hospital the next day, but my baby had to stay in hospital for a few more days as the doctor wanted to do an MRI on her.

I went home without baby, far from being able to cuddle and breastfeed her as I had planned to. During the quiet moments at home, I will remember her and start to tear, and pray so that she could be quickly discharged, and so that her brain would heal by God's will.

I called the doctor up every day to ask about my baby. On the 3rd day, I received good news that my baby could be discharged. I hurried to fetch her, and was so elated to finally have her in my arms again. Before leaving the hospital, she cried as she was hungry, and I managed to breastfeed her for the very first time.

We had to return to the hospital for frequent weekly checks, and then monthly checks. The doctors put baby Soffyah under the Early Intervention Program, where she had regular sessions with the physiotherapist who checked her growth and development and who helped us train her so that she would not be too far behind the normal babies.

It was an eye opener for me being in the Early Intervention Program sessions. I saw many kids, from babies to older kids, with conditions that are not normal, accompanied by their parents to meet their therapists. I felt so much for them, and I know that their parents are really strong people, who have braved the hardships they have met along the way as they raise their special kids. These meetings reminded me of how we should be grateful for what God has blessed us with, because there are reasons why God wants it that way. And God always wants the best for us.

We also had appointments with the neurosurgeon who monitors her head scans, and her mental and physical development. There were also the routine monthly checks by the pediatrician who will look out for any signs of developmental delay.

On one of our visits, when Baby Soffyah was 5 months, the pediatrician was not too satisfied with her response during the knee jerk test, and her overall "floppiness". Her muscles were weak. We were sent for another head scan a few weeks later.

The earlier sessions with the physiotherapist always made me feel depressed at the end of the sessions. Baby Soffyah didn't do too well for her tests, where she had to perform an action and was graded by her response. For example, when she was required to lift her head and hold it for 10 seconds, she managed only 3 seconds. Each time I returned from the sessions, I would end up feeling that I didn't do as best as I could have done to help baby Soffyah.

We prayed hard - my husband and I, his family and mine. We did special prayers to seek God's assistance in helping baby Soffyah develop into a normal healthy baby.

When she turned one year (in picture, as she had first birthday celebration), we had an appointment with the neurosurgeon where we were greeted with very good news. He said that baby Soffyah's head size looked fine, and her development was on par with the normal babies her age. He also said that we should not worry, because she could have just suffered from a stroke while she was in my womb, but the brain is plastic and has made up for the loss by itself. He confirmed by looking again at the head scans and told us that the size of the brain ventricles did not increase.

As a standard procedure, we still have to visit the neurosurgeon for another year, and if there is no cause for concern, she can be discharged. For now, we are enjoying every little time we have with each other, discovering the funny and cute sides of this ventriculomegaly survivor - our special baby.

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