Amara Tegan Micah Behr

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Amara’s Story

“Each day is a gift and We are grateful each day we have with her.”

Amara Tegan Micah Behr, Trisomy 18, 7/27/2016, Quesnel, British Columbia, Canada

12/14/2017 update: Amara has been doing amazingly well. She has made some very big milestones this year. For her 1st birthday August 1st, we celebrated with all her family from Ontario coming to visit us in British Columbia, and her father and I were married the same day!

Amara was recently cleared by cardiology, it seems her small vsd and pda have healed on their own! It’s so rare to get news that we will have fewer Dr. Visits rather than more and it is so wonderful she is growing up healthy.

She is certainly growing up happy. Our work with a team of physio, occupational and speech/feeding therapists has been fantastic support for Amara and has helped her accomplish many milestones like pushing up and holding her head up, sitting up without supports, rolling over, babbling, feeding orally and so much more!

Amara loves when her Daddy plays guitar and dances with her. She is ticklish and silly and loves to smile and yell, she LOVES the water and we will be going to swimming lessons at the local pool soon!
She likes to watch the fish in our giant fish tank with her Daddy, being outside in sun or snow, and all the kisses she can get!

Her new favourite thing to do is blow raspberries, clap and wave. She has very expressive hand gestures.

Amara goes to play group with her twin cousins who adore her.

She has 2 teeth, is still nursing and is such a night owl, sleep is difficult.

Amara has a beautiful life full of love and she enjoys every day.

01/18/2017 update:  Today Amara is 5 mo the and 7 days old. We are home after 3 days in hospital after Amara developed viral pneumonia. She had become dehydrated and needed antibiotics as well as a broncio stimulator in a nebula tor to help clear the rattle in her chest from the infection.

This girl is so strong, she quickly recovered after 24hrs on iv and was nursing again. Her lively personality returned shortly after with smiles beaming brightly. Amara was a delight to all the nurses and doctors who had delivered and cared for her, they now were able to see how she has grown (now 8lbs 10oz. After being sick) how strong and happy she is, and how she has filled the lives of her parents and family with such love.
She had the most beautiful Christmas with us all together. Amara is a miracle girl.
Her hip and kidney ultrasounds came back clear. Although her right kidney with the duplex is slightly enlarged, blood tests and urine tests from her stay in hospital showed no problems her kidneys.

Amara is a happy girl and our lives are all the brighter since she joined our family.

amara-212/4/2016 update: When I first wrote about Amara, we were in a world of unknowns, with all doctors trying to prepare us for the worst, while friends and family tried to help us hope for the best.

Well Amara was very small, and showed a duplex, and our OBGYN was trying to prepare us for the likely event that Amara would not live to birth, or survive birth, or would most likely die of kidney failure.

We gathered family with us as we prepared for her due date, and after 4 days past we were anxious to meet our little girl.

After 10 hours of labour Amara was born, breech, at 4 lbs and 15 Oz.

All my husband and I could hope for was to meet our daughter, hold her hand, look into her eyes and have her know the love of her family.

Amara shocked us all when she took her first breath, cried and squirmed with life. She reached out and held her daddy’s finger.

I lay in bed that first night in shock and disbelief coupled with utter joy at our little miracle girl. Over the next 8 days in hospital she was treated for jaundice on a light bed, was assessed for feeding ability, reflexes and Amara continued to astound. She was able to feed on her own, had no problems with urinating and slowly began to gain weight.

Our greatest dream came true when we were able to take Amara home!
At first we worried every day, for her fragile body gained weight slowly, and bottle feeding was difficult but soon she was breastfeeding!
Eventually our fearful state of mind shifted from worrying to hoping.

Amara has had an Echo of her heart that shows a very small vsd which has had no effect on her health and she has minor crossing of fingers but still is able to use her hands fully.

Her kidneys will be checked this week but still she has no problems urinating.
Amara is now 8lbs. 2 Oz. And growing stronger each day.

We have an appointment to see a physio therapist to help Amara develop gross motor skills and strength. She may be small, but she is mighty. Today’s she celebrated 4 months with cousins and family. She loves to spend time with her cousins and smiles brightly to see her us each day. She loves to be kissed, cuddled and to be outside.

We are now planning Amara’s first Christmas and look forward to every day that we get to see our baby girl grow and learn, love and play.

Already Amara has astounded all her doctors, surprised her family and brought so much love to all who meet her.

I will continue to update as Amara grows, surpassing all expectations.

“Let life not been usurped by its number of breaths, but by the benevolent impact it has on us all.”

trisomy love decal full sizeOriginal text:  Amara Tegan Micah Behr is 30 weeks and still kicking and living inside me. On March 9th my husband and I found out that she has Trisomy 18, a fatal genetic condition that will inevitably one day take her life and with it a part of ours.

I have known Trisomy 18 most of my life as I lost my youngest sister to T.18 when I was 9 years old. T.18 babies may not live through to birth, those that do may only live hours, days, weeks or in some cases months.

My sweet sister lived 72 days and every one of them was filled with the love of her family. Some T.18 children can be so lucky to live to see their first birthday and some possibly even into early childhood but due to the nature of Trisomy 18 a long life is not a possibility as there is no cure.

Although I was given the choice whether or not to continue the pregnancy for us it was no choice. We knew we would ensure, as her parents, that Amara lived every day of this life she has been given and it would not be by any choice of ours to end it for her. She is alive now, today and really this is all any of us are granted. Each day is a gift and We are grateful each day we have with her.

We are planning for her birth and hoping that we may be among the lucky few who are able to take their baby home to cherish what time we do have with her, to show her a life full of love with her family. We simply ask for your compassion, your hope and understanding. Have gratitude for every day.

I have set up this campaign to help raise money for Amara. All proceeds will go to cover expenses and medical needs to help Amara live the fullest life she can. All additional funds raised will be donated to Northern Health British Columbia to go towards pre and post natal care to help those families in need and to help care for all children especially those in remote areas.

Please donate and help us give Amara a life full of love. Help us help other families in need.

Raina Enss

  • Diagnosis: Trisomy 18
  • Location: Quesnel, BC, Canada

  • DOB: 07/27/2016