Lessons I’ve Learned as a Special Needs Parent
Tarat, proud mom to Alexis, reflects on the lessons that becoming a parent to a child with cerebral palsy has taught her.
By Tarat Chuttong
Bad news kept coming out of the doctor’s mouth during our 21 week ultrasound. I heard what she was saying and kept telling myself there must be another explanation as to why the baby’s ultrasound didn’t look right. But I couldn’t hold back my tears when she said, “I am 99% sure your child is abnormal”. She advised us to consider terminating the pregnancy. My husband held me as I cried.
That was three years ago. The doctor suspected our child had skeletal dysplasia (abnormality in bone growth). This suspected diagnosis turned out to be incorrect.
Lesson learned: Doctors are only human and may make mistakes. When faced with major medical decisions, seek a second opinion.
The correct diagnosis, received later from another doctor, was that I had severe intrauterine growth restriction (IUGR). In other words, our baby was not receiving enough nutrition. Not long after, the doctor informed me I had preeclampsia, which could be life-threatening for both me and our unborn child. The doctor suggested we have an emergency C-section during the 31st week of gestation. I was hesitant to do so, but my husband voiced his concerns that if I was endangered, so was our unborn baby.
Shortly after, Alexis was born premature, weighing 660 g. I took my four months maternity leave to stay with him every day from morning to evening. It was a tough time filled with uncertainty. We didn’t know whether our child would survive. We got through this challenging period with lots of family support and great care from the medical team. Alexis stayed in the NICU for four months, including two months on oxygen support. He left the hospital weighing 3.3 kg.
During this time, I met another mom who had the same diagnosis of severe IUGR. However, she did not have preeclampsia, and was able to carry her unborn child up until 36 weeks. Her baby weighed 1.2 kg at birth and was quite strong and healthy, hardly needing any oxygen support. The baby stayed in the NICU for two weeks and a further month in hospital before being discharged and able to go home.
Meeting this mom made me question: what if I had held Alexis in my womb a bit longer—would it have helped decrease the length of his stay in the NICU? Would he have been stronger and healthier? What if I had chosen the option of staying in the hospital for another three weeks, close to a doctor who could monitor my preeclampsia?
Lesson learned: A premature baby born at less than 24 weeks has around only a 50 % chance of survival.1 If you are having a difficult pregnancy, remember that your baby will become stronger when given the opportunity to develop as much as possible before birth. Premature babies born after 34 weeks gestation have the same chances of growing up healthy as babies who are delivered at full term (40 weeks).2
After four months in the NICU, we took Alexis home with our hearts full of joy. After arriving home as a family, it didn’t take long for us to notice how Alexis was struggling with motor functions such as rolling over, sitting up, and crawling. He was also not gaining much weight and his percentile on the growth chart was dropping.
We noticed a stiffness in Alexis’ right leg and that he preferred to use his left hand over his right. When he was around seven months old, we decided to put him into an early intervention program: physical therapy to help with gross motor skills, and occupational therapy to address fine motor skills, sensory processing, and self care skills. To help relax the tight muscles in his right foot, he would also get therapeutic massages at the hospital. At two years and three months old, Alexis finally started walking on his own. His effort and hard work during his physical therapy had paid off.
However, he still wasn’t putting much weight on his right leg. We decided to get to the root cause and doctors advised us to get an MRI. The results came back and he was diagnosed with cerebral palsy, which is caused by abnormal brain development that affects his ability to control his muscles. This was related to his premature birth—a known risk factor for cerebral palsy. It was such a relief to find out the root cause of Alexis' condition. Now we are able to get him the right kind of treatment. Luckily, we put Alexis into physical therapy early. If we hadn’t, I don’t think he would be walking as he is today.
Lesson learned: If you have concerns about your child’s development, don’t wait too long to address them. The earlier, the better! Early intervention can change a child’s developmental path and improve outcomes for children and families.3
Alexis is now two years and eight months old, and just like other loving parents, we want him to have a fulfilling life and the best possible future. I learned recently that some adult advocates with the same diagnoses prefer to be categorized under the term ‘disabled’. As the mother of a medically complex young child, I believe there is so much potential for his growth and for him to gain more abilities in the future. In my opinion, I think the term ‘disabled’ leans more towards the negative. Not all labels are equal. Alexis is a warrior and a fighter. For me, these terms are powerful, conveying that our son has overcome one of life’s most difficult birth battles.
Words like these from the ‘My Child’ website inspire me.
“There is evidence that children with cerebral palsy far exceed initial assessments. Children that physicians have once said would never walk have not only put one foot in front of the other, they’ve climbed mountains. Others that were never expected to communicate have spoken, written books, and inspired others with words of wisdom.”4
With the right kind of support and treatments, we can help Alexis achieve his full potential and thrive. It will take a lot of work and effort to get there, but as a family we are ready to take on the challenge.
Lesson learned: Do not let your child’s diagnosis define them. As parents we are their lifelong teachers. Our guidance and support can help them thrive, even through the most challenging circumstances.
Disclaimer: The details provided in this article are for informational purposes only and not intended to substitute or replace medical advice. If you have any concerns about your pregnancy or health and the health of your baby, please contact your doctor.
Photos courtesy of the author.
References
1 NICHD Neonatal Research Network (2022) Outcome Data for 22 to 25 week and 401 to 1000 g Birth Weight Newborns. neonatal.rti.org/index.cfm?fuseaction=calculator.start
2University of Utah Health. (2022) When Is It Safe To Deliver Your Baby? healthcare.utah.edu/womenshealth/pregnancy-birth/preterm-birth/when-is-it-safe-to-deliver.php
3CDC. (2021) Why Act Early if You’re Concerned about Development? https://www.cdc.gov/ncbddd/actearly/whyActEarly.html
4My Child at Cerebral Palsy.org (2022) Maximize Potential. cerebralpalsy.org/the-journey/maximize-potential
About the Author
Tarat is the proud mother of a special needs son. She runs the YouTube channel ‘Mama Says Don't Give Up’ to document her journey as a mother, as well as the highs and lows in overcoming Alexis’ medical condition in the hopes of creating awareness and connecting with others going through similar challenges.
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