Rachel: Perinatal Stroke, South Africa

At the beginning of 2011, my husband and I decided that we would like to grow our family; we wanted a baby. Within three months, I was pregnant and my “mommy instinct” told me that we were going to be blessed with a little girl. I was right!

I had a fantastic pregnancy. Other than the usual, expected side effects, I was healthy and active. It was such an easy pregnancy and I loved all nine months of it. We had all of the mandatory checkups and tests and the results were always good. There were no concerns with regard to the health of my baby and while she was a bit on the small side, she grew nicely and kept on track.

Although I wanted a natural birth, at 39 weeks I was scheduled for a cesarean section. The only reason for this is that my baby was breech.

Rachel arrived as scheduled, a bright pink, crying bundle. The birth was uncomplicated and fast. Rachel’s APGAR score was 9 out of 10. There was just one issue – Rachel was born with an undeveloped left hand; she only has one finger on what she now refers to as her “born hand”. This was a bit of a shock to us, as it was never picked up in any of our scans, but it was a minor birth defect and she was, most importantly, healthy. At almost full term, Rachel was born at 2.47kg (5.45lb) – a similar birth weight to me when I was born.

In the first few months, Rachel was a calm baby, but she cried quite a bit and did not sleep too well. She’s still not a great sleeper. She disliked being swaddled, cuddled or covered. She did, however, grow. She met her expected milestones, rolling to one side at first, eating well and taking solids at the right age. Rachel was very strong and lifted her head from an early age, soon after lifting herself up onto her forearms. She discovered her hands, but didn’t quite get her feet into her mouth.

In her first year of checkups and pediatric visits, the feedback was always the same – Rachel was in the tenth percentile on the growth charts, but she followed the shape of the graph perfectly and so there was no concern; after all, she was a small baby and “she has a small mommy”. Rachel was a very healthy baby with a strong immune system and thus hardly ever ill. I’m eternally grateful for that!

By her first birthday, Rachel was making no attempt to stand unassisted, or to walk. She leopard crawled everywhere and did not manage to crawl on all fours. When she sat, she sat side-saddle. She was also very predominantly left handed (even though it is her left hand that is undeveloped).

Everyone told me that every child is different and that she would get there in her own time. So I gave her time.

Shortly after turning one, however, the suggestion was made to me to take her to a physiotherapist. We assumed that maybe the side-sitting and incorrect crawling posture were somehow her way of compensating for her left hand. We were referred to a pediatric physiotherapist by a family member and made the appointment.

By the end of the very first visit to the physiotherapist, she had made her assessment. She asked me if Rachel had ever had an MRI. Of course, she had not, as we had never had reason to do one. She recommended that I book an MRI immediately and told me of her suspicion that Rachel has cerebral palsy. I was overwhelmed and completely surprised.

I contacted Rachel’s pediatrician to obtain a referral for the MRI. She was quite reluctant as Rachel never showed any signs for concern, but we booked the MRI any way. The pediatrician prepared me that often the MRI does not show up anything. We waited for hours to receive the result on the morning of the MRI. The pediatrician’s reaction to the x-ray will always stay with me. She was completely astounded to see very definite brain damage; the smaller left hemisphere of Rachel’s brain, with a thinned lining covering the brain. Rachel had the results of an ischemic stroke – a stroke caused by the blockage of a vein or artery, most likely due to a blood clot. The brain damage was old, indicating that the stroke had happened during my pregnancy with Rachel, estimated within the first trimester. The cause of the stroke – unknown.

The good news was that the damage that was done was as bad as it would get. It is not degenerative and what has been done, is done. The diagnosis, however, is that my little girl has spastic hemiplegia of her right hand side (due to the stroke in the left hemisphere of her brain), level 1 cerebral palsy.

Looking back now, the signs were there. A breech baby. Never wanting to be swaddled or held too tightly. The obvious favouring of one hand. Only rolling to one side. Sitting side-saddle. The physiotherapist also pointed out to me that when Rachel did stand (with some assistance), her left foot would be flat on the floor and her right foot would be up on tippie toes – a result of the hypertonic muscles pulling her right leg shorter than her left. Her right foot is slightly smaller than her left – now I know why her one shoe is forever falling off! And her slightly turned in right foot that now always causes her to trip over her own feet.

What followed this discovery has been several years of physiotherapy, speech therapy (mostly for drooling issues, rather than actual speech), visits to geneticists, blood tests, follow up visits to the pediatric neurologist and constant occupational therapy sessions.

The result? Rachel is now five years old. She runs, jumps, rolls, swims and plays just like all of her friends do. She attends a mainstream school and enjoys ballet class. Yes, she has to put in a little more effort when it comes to balancing and performing her fine motor activities such as cutting out, but she is determined and there is almost nothing that she cannot find a way to do. Rachel’s biggest challenge at the moment is learning to use her right hand – the one affected by the spasticity, as she cannot grip with her (ironically) more functional but undeveloped left hand.

My biggest challenge is to help her to develop the confidence that she needs to learn and to grow and to one day have as an adult with a physical disability.

Other than the obvious disfiguration of Rachel’s hand, most people have no idea that she has cerebral palsy. (Just to clarify – Rachel’s undeveloped hand has not been related to her cerebral palsy in any way and is not an indication of cerebral palsy). I know, however, that for the rest of Rachel’s life, she will have to work on stretching those overly tight muscles (especially on cold winter days), that we have a lot of sensory issues that we still need to work through, that as her school work increases and she reaches the higher grades, her time to complete tasks needs to be monitored, that with every growth spurt and change in muscle shape she will need to continually work her body to stay supple, that with every milestone that she reaches, physically, mentally and emotionally, we never know what effect it will have until we get there. But, we will get there and we’ll do it together. Rachel is a warrior, a leader by example, my sunshine and my pediatric stroke survivor!

Note: Rachel’s mom Tamsyn De Jager, is the founder of Special Peeps, an organization in South Africa created to share information, create awareness, provide support and connect families who have children impacted by cerebral palsy and other special needs. Also see their Facebook page for more information and upcoming events.

Help us #MakeMayMatter for kids impacted by stroke! Share this story and #BeAVoice for pediatric stroke.

 

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