My Baby Angela - living with a diagnosis of anencephaly
Baby Angela Morales was diagnosed with anencephaly while in the womb...but this little girl was about to surprise everyone.
"I was feeling her moving and kicking - I knew she was alive to me. We decided to give Angela every moment she had - we loved her before the diagnosis, and knowing she had anencephaly didn't change our love.
When Angela was diagnosed with anencephaly at 16 weeks into my pregnancy, the doctor told me "your baby is incompatible with life". I was in shock and I couldn't move. I had no words, and with a lump in my throat I asked: "How long do you think?" They told me she would only live for minutes or hours after birth.
I couldn't understand what "incompatible with life" meant at that moment of her diagnosis. I was feeling her moving and kicking. I knew she was alive to me. They said that those movements were only muscle reflex, and that she was only alive because she was attached to me but as soon as I delivered her, she would die. At that moment I knew that what "incompatible with life" meant for them - no hope, no baby, no interventions, no care or treatment. Sometimes I feel families are encouraged to terminate, but we decided to give Angela every moment she had. We loved her before the diagnosis, and knowing she had anencephaly didn't change our love.
We brought her to the park and the beach, she was involved in everything we did as a family. We embraced her in our lives, treasuring every moment she had with us while she was still safe and warm in my womb.
When I felt overcome by grief, she would kick to make me smile. We wanted to live her life to the fullest because where there is life there is also hope. When I went into labour and we rushed to the hospital, I thought we'd be saying hello and goodbye to her. But she proved them all wrong.
Give my baby girl a chance
She was born on March 23rd, 2014 and we were all there, so many family members, to meet her and tell her we loved her. I will never forget the first moment I was handed my beautiful little girl. All the pain and worry disappeared and I felt a fierce rush of absolute love. Everything in the whole world stopped at that moment.
I didn't see anecephaly, I saw my beautiful daughter. And she was so beautiful with thick black hair and big dark brown eyes. All I wanted to do was to hold her and love her.
They covered her head, and we kept her skin-to skin-most of the time. She was such a sweet little baby.
Angela was not open from the 'eyebrow to the back of the head ' as doctors told me many times she would be, and there was some brain present above the brain stem, but we were told she would not live for long. However the next day, to everyone's surprise, she was still with us, and two days after she was born we brought her home - with hospice care since she was still not expected to survive.
But she did survive. She is such a fighter. She had her brain exposed for almost two months until she has a surgery to close her skull.
Angela is now 2 years and 10 months old - she is our miracle, and she is compatible with life and compatible with love. She breathes on her own, she loves cuddles and hugs, she rolls on her side, she loves the beach, she is such a happy little girl. We thank God for our beautiful daughter every day.
"Her life is not less worth because she is disabled or dependent on us."
It has been sometimes difficult. Because doctors believed her to be 'incompatible with life, everything I asked for her, they usually said she didn't need. Why? Because they were expecting her to die any minute. "No sophisticated intervention is appropriate for anencephalic babies" one doctor said. It's a big challenge, and we've had to change doctors more than we'd like, and the doctors treating her now are very compassionate and passionately trying to find treatments for our little girl.
Doctors feel now that Angela's condition may be between anencephaly and microcephaly, but they also say they may have to invent a name for what she has. To us, she is our little girl – and she is so wonderful.
We did not know what would happen after she was born, but we knew she was more than the diagnosis because her diagnosis didn't define her as human being. Her diagnosis is not her identity. She has proven she is compatible — compatible with learning, growing and developing in her own pace. She is capable to feel the love we give her, and that's all she needs.
It's true that sometimes a condition is limiting, and a person's life may not be the same as someone else's life, but it doesn't mean they are incompatible. Her life is not less worth because she is disabled or dependent on us.
So thankful for our precious baby
We are very thankful to God for this precious gift - and she is a gift not a burden. Every child is a gift from the Lord and every gift from the Lord received with thankfulness does not come to hinder life but to enrich it. LIFE and LOVE are the most precious gift. Angela is teaching us to love unconditionally, our love for her has no limits, we love her so much, she is teaching us to sacrifice for love, to give yourself to take care of a loved one, loving them and taking care of them until their natural and dignified death. If the unborn child has a life-limiting condition what corresponds as a society is to support the parents and give the baby the same treatment we give to the elderly, the sick or anyone with a terminal illness.
Angela has brought so much joy to our family. It's like having a baby that never grows up so while other people have their children and experience that "baby stage" for a short while we have it all the time. The joy we feel when she coos and smiles and response with noises when we call her name, when she lifts her hands or kicks her legs, these are huge milestones for her. She proves to us the value of patience and perseverance and has indeed taught us how to love. She taught us to love in moment of suffering, peace and joy in moments of struggles. She taught us to not take life for granted.
Even the doctors now say they are learning so much from Angela! At Boston Childen's Hospital, they told us 'there is no prognosis for Angela - she is going to let us know!' They are amazed by her strength and her determination to be here every day, breathing on her own.
Caring for a severely disabled member of the family is living life on a different level. But it is a level that we as a society must be prepared to support and facilitate so that the people involved can achieve their full potential – regardless of how far that potential can reach. We all learn differently!
"She has proven she is compatible - compatible with learning, growing and developing in her own pace. She is capable to feel the love we give her, and that's all she needs."
Let them live even for a short time
There will always be cases where severely disabled babies won't survive for long after birth. What should our response be then? Isn't it better to let our babies live even for a short time, and give them the love, the care, the dignity and respect they deserve as a human being. The sick, the defenceless, the voiceless, the unborn babies need our help, our voice, our protection.
Angela has lived longer than expected, we are very thankful for that. She proves that every baby deserves a chance. Miracles do happen everyday but remember that whatever happens God will give you the grace, the strength to face everything ahead.
Don't give up your baby, even if you get a minute, an hour, day, or you dont know how long, is worth living. Is worth to feel unconditional love. You won't regret giving a chance of life to your precious child, your child is not a choice, a diagnosis does not define who she/he is, it's your BABY.
No one knows how long Angela's life will last, but that time she will be immensely loved and happy. Is not that what we all seek?
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ANENCEPHALY is a neural tube defect which means that the baby's skull and brain do not develop correctly in the womb. A recent study published in the British Journal of Obstetrics and Gynaecology found that 72% of babies with anencephaly lived for a short time after birth. Of those children, 25% lived up to 5 days, while up to 7% lived up to 28 days after birth.
Jacquier M, Klein A, Boltshauser E. 'Spontaneous pregnancy outcome after prenatal diagnosis of anencephaly.' British Journal of Obstetrics and Gynaecology 2006; 113:951–953