Charlotte Mary, the Streckfuss' second anencephalic child, was delivered by cesarean section June, 21st, 2004. She lived for 5 days, and died on the same day as her brother, Benedict, also anencephalic.
Many of you may have wondered, "What’s the point?"... or perhaps pitied us for ‘having’ to continue carrying a child who is not going to live for long... I understand these thoughts, because when my sister was carrying Thomas Walter (who had been diagnosed with anencephaly at 18 weeks and lived for 17 ½ hours after birth) I really didn’t properly comprehend the whole situation. I knew it was the ‘right’ thing to do. I didn’t question that I would have no other option if the same thing ever happened to me (although I knew it never would!) But I thought how awful it was to know for over four months that the child you are carrying is unable to live outside your womb.
Once he was born, I was able to hold my nephew and see him finally as a real person - a precious unique creation - I began to realise that there was a lot more to it than mere ‘ethics’. When, much to my disbelief, my own baby, Benedict, was diagnosed with this same condition four years later - I was finally able to grasp it, although it has taken me a long time to be able to put my thoughts into words. It is only since Charlotte’s diagnosis that I have found words that almost convey my feelings.
Some people think we carried Benedict and Charlotte to term because we don’t agree with abortion, because we are Catholic, or perhaps because our nephew was carried to term after a fatal diagnosis. While these factors probably all played a part in our immediate refusal of the option to ‘terminate’, this is not what it’s all about! It’s about love! It’s about my baby! It’s not about some tragic, fatal medical condition - it’s about my child. We do not possess more strength than other people. It’s not because we can cope where others wouldn’t. There is no way to avoid the sad fact that she cannot live long after birth with this condition, but causing Charlotte to die earlier will not stop this happening. Causing her to die earlier will only take from us the beautiful experience of knowing and loving her.
The tragedy is not the fact that we know our baby will die. The tragedy is that our baby will die. It is not nice to know for months beforehand, but it gives us a chance to appreciate a life so brief, and not to miss a moment.
The value of Thomas Walter, Benedict and Charlotte cannot be measured by the length of their lives - we don’t apply this yardstick to adults, so why should we to babies? A baby is not a possession, an accessory to acquire. A baby is a gift, a new entity, a precious, individual soul loved by God. We are created for a purpose, there is a reason for our being here. Even if that reason is unclear to us most of the time, we are constantly affecting other people in our families, communities etc. Who knows what purpose can be fulfilled in 9 months and one day? I don’t know, but God does. I do know that Benedict left a lasting impression on our family, he made us slow down, savour life, and treasure our other children even more. He made us realise that we cannot control or predict what will happen in the future, he made us rely on God. And how often are we given the opportunity to really give another person true unconditional love? Love that truly expects no return? It is a blessing to experience that kind of pure love!
So don’t pity us for carrying a child we know will die. Carrying this beautiful person is an honour. Grieve for the fact that our baby will die. We wouldn’t wish away the time we had with Benedict, and also this time we are now experiencing with Charlotte, just to save us the pain of losing them. I’ve always thought of it like this; if your 3 year old was diagnosed with untreatable, fatal cancer and had only 4 months to live; would you prefer the doctor kill your child straight away so that you didn’t have to wait for his/her impending death? Or would you prefer to spend as much time as you could with your child and love him/her for as long as you had left?
Someone asked us after Benedict died, "Was it worth it?" Oh, YES! For the chance to hold him, and see him, and love him before letting him go ... For the chance for our children to see that we would never stop loving them, regardless of their imperfections? For the chance to give him everything we could? Oh, YES! Love your children, and remember that they each have their own unique mission. Children are always and only a blessing from God - even if they don’t stay very long ...
- Teresa Streckfuss