Baby’s first birthday – Reports from two different worlds
A Mother from Germany talks about her son´s first birthday who was born with Spina Bifida and Hydrocephalus:
„…when I told my girlfriend the other day that I had made a huge fuss about my son's first birthday, she just said, “What's the point? He doesn't even appreciate it yet." And that's when I realized – I think I need to explain something to the world outside.
Our little son was born special. The day he arrived on this planet, we knew he would enrich our lifes more than we ever thought. But the same day he was born our hearts were filled with fear and worries at the same time. He came to this world with a defect of the spinal cord and his life was threatened from the beginning. The doctors said he needs urgent surgery and my little son got taken away from me after birth and kept on the neonatal intensive care unit. Sometimes I still think that has made it very difficult for me in the beginning to develop a mother-child relationship and when I think about it today my eyes fill with tears.
During pregnancy I knew already our little son was going to need special care after birth, some people said he would not have a chance to survive or lead a normal life so better to terminate pregnancy. But how could I decide against the biggest gift I was about to receive ever in my life. Our hopes and prayers have been heart and we found help and support in a nearby hospital.
Our son is a fighter and he managed to survive all the early surgeries and after many weeks of uncertainty he showed us that this all was worth fighting for and we got send home to start our new life. Ever since than he has been filling our home with love and sunshine. He is the most happiest Baby I could imagine, enjoying to discover the world around him at his own pace. Sometimes my husband and I keep asking will he ever walk or will he be needing a wheelchair later on in life. But I came to realize that this does not matter to our son at the moment as he is discovering his own two feet at his own speed … trying to crawl and to already support his feet standing. Now after one year I look back and cannot believe what a great big step forward we all have made.
For many parents, the first year of their child's life is the most exciting, thrilling, but also the most worrying and anxious. Especially if your own child didn't have an easy start in life or maybe you weren't sure at birth whether you would even see the first birthday. In the first year we have achieved so much, as a family, as parents and of course also the little man, who had to find his way in life as a son. We are so proud of our little sunshine and what we have mastered, I think that is a reason for us to celebrate the past year and this milestone of the first birthday. The best gift is the child itself anyway.
When I think back to my son's first birthday, I'm super happy that I decorated everything so beautifully, came up with so many special ideas, and went to all the trouble to make it a great weekend because even though he didn't really care – for us it was unique. To see him so happy and satisfied on this day, to have the pictures of this day for him as a memory and just also to have this feeling, we have done everything right as parents, that is definitely worth celebrating even the smallest already big. Probably parents celebrate themselves on their babies first birthday more than they celebrate their little ones, but let's be honest, we parents also deserve a party, dont we? Parents should be celebrated on their children's birthdays and all their feelings like love, pride, joy are simply part of it and I'm already looking forward to all the birthdays that are yet to come. Just like this year, I will again decorate the apartment, rack my brains over the perfect gift, bake tons of cakes and cook the perfect dinner, and of course the little sunshine gets dressed up in beautiful clothes, because we all deserve it on this special day. There will be many things to look back on with pride, just like this years achievements. Every birthday simply is a very special gift….“
Bosco Mtui is a 7 year old boy with Spina Bifida and Hydrocephalus from Tansania, also his parents celebrate every of his birthdays and remember very well, the day when he turned one year:
Bosco Paschal Mtui is a 7 year old boy born with born with Spina Bifida and Hydrocephalus in Tansania. He received his surgical closure of his open spinal cord when he was 2 days old and because of rising cranial pressure he received a cerebral shunt at one week of age at KCMC hospital in Moshi.
His parents are living in a smaller town in the west of Tansania and had been feeling blessed with the arrival of their son. Although they had been facing many challenges throughout their first years. Relatives did not understand that Bosco was different and had special needs. They turned away from the little family in the beginning because they thought he was cursed by an evil spirit. But the family was looking for more medical help and attendance which was hard since there is not enough doctors that know about this condition. Every year Boscos parents organized a little birthday party for their son and each year Bosco grew up more and more to be a happy boy. His parents remember that each year they had been baking cake for Boscos birthday, bought Soda and Coke, invited the neighbors and had a small party at their house.
One year Bosco was even taken for a ride on his fathers motorbike. As a tradition each year the family took a picture of Bosco to remember the road they have already left behind and to look ahead to his future. They are thankful for him to be in their lifes. One remaining problem that makes it impossible for him to attend school is his incontinence. Due to his spinal cord malformation his nerves to control bladder and bowel function got damaged and he is loosing urine. The only way to reach continence is to catheterize the boy regular to prevent infection and safe the kidneys. Bosco is a very smart boy and willing to learn doing this by himself. So his next birthday will be celebrated as a school kid hopefully.
Interview with Bosco´s father:
How did you celebrate your son's first birthday?
– On 24.05.2015 we invited friends of the family. They came to our house and we cut and shared the cake together.
What were your thoughts on that day?
– We were grateful for the year we spent together and proud of what we accomplished together.
What difficulties did you have to face in the first year?
– There were many febrile infections, urinary tract infections usually.
What fears accompanied you as parents in the first year of life?
– How will we be able to provide enough food? What will he be allowed to eat? How will we be able to care for Him if something happens? Will we be able to pay his medical bills? After the first year, we became much more confident and routine in dealing with him.
Did you have any concerns about telling your family and relatives about your son's birth defect?
– In the beginning we told only our closest relatives. Many family members were prejudiced and believed he was cursed and would not survive.
Were you ever worried about how other people in your community would react to your son, what they would think?
– Yes, in the beginning, but later as more time passed we saw him as a gift from God.
Were you worried that he would have difficulties in life?
– Because of his spina bifida, we were already worried how he would manage his life. We wondered, will he be able to walk. Will he be able to go to school. Will he have to share the toilet with other children. How will he be able to make the long walk to school?
After the first year together, do you feel strong as a family and proud of what you have achieved together?
– Of course we were afraid that he would not survive, but today we believe that he can grow up like any other child.
What did you buy to organize the birthday party?
– We had a small suit made for 45.000 Tsh (16 Euro). There were drinks for 24.000 Tsh (8 Euro). 2kg of meat for 12.000 Tsh (4,50 Euro). Candles for 6000 Tsh (2 Euro). And 3kg rice for 6000 Tsh (2 Euro) and a cake for 5000 Tsh (2 Euro). This was already a lot of money for us, but we were very happy to do this for Him.
What is your biggest dream for your son?
– I wish he could be a doctor, a teacher, maybe even a pilot one day.
Would you do anything differently if you could go back in time?
– No, except going to the clinic with him much earlier and more regularly.