This blog is about love despite a prenatal diagnosis, grief & healing after baby loss, hope, faith, pregnancy after loss and Hydrops Fetalis awareness.

Lily's Story


Here’s the story of a very special baby that changed me forever.

December 4, 2011, I decided it was time I took a pregnancy test.  I don’t know to this day how I ended up pregnant with our 6th child.  I was shocked and wasn’t so sure I would have planned a baby right then, having a baby born in July was not something I would have planned on purpose! We were in the middle of a big renovation project, under pressure to finish.  Another baby was definitely part of what I had envisioned for the future, but not right now.  I had always liked to believe that I had control over things.  That same evening, I thought I was miscarrying, and to everyone’s relief, the baby hanged on.  How stupid I felt about all those silly worries I had.  What could  be more beautiful and miraculous than a new life growing in my womb?  Nothing was more important and precious than this new addition in our family!

I lost no time coming up with the perfect way to announce to family and friends our new family member to be born.  On our family Christmas card there was a picture of my children along with a picture of the positive pregnancy test…we were not the only ones surprised!

I was still nursing my 2 year old and weaning him before his third birthday was not what I had been wishing for.  All my other babies that were still nursing when I got pregnant weaned themselves at about 16 weeks into my pregnancy probably due to the milk not coming in anymore.  But this time I decided I would try to nurse all the way and breastfeed both the baby and my toddler once he would be born, it was now or never!

At my 12 weeks appointment with my midwife, we listened to the little heartbeat, she found it quickly which calmed down my fears…  I had been spotting on and off and I was very nauseous and tired.

 “Morning sickness” and fatigue were still intense even after 17 weeks.  Also my belly was tenderer when I touched it compared to my other pregnancies.  I was still worrying about everything being normal and healthy.  I was beginning to think to myself that this might indeed be my last baby because it was so hard on my body.

At 21 weeks, on March 20th 2012, it’s our fun ultrasound appointment!  I would see my baby and get to have and share with everyone a picture of my baby!  This was the main reason I was excited about the ultrasound.  Deep down, I was still worried.  I should have known something was wrong when the technician didn’t spend as much time as usual with us and complained the baby was not in a good position.  We could see the heart beating, I figured she was new and needed help and once again tossed my doubts in a tiny corner in my mind.  Then I heard the ugly words: “incompatible with life”.  This could not be happening, surely, they had made a mistake!  These words take me back to the day my whole world was shaken, everything I knew, I didn’t know anymore and everything I didn’t know, I was about to start learning…  We were immediately told we had options.  Options?!? As if my baby’s heart had the option to beat or not to beat!  I would carry my baby; I was not the one who had performed the miracle of putting this little life here on earth, I was not the one who had the right or the privilege to take that life away!

We were first told that my baby had water everywhere in her body, especially around her neck and in her abdomen and this could be associated to Trisomy 13.  The report also mentioned that amniotic fluid was absent.

Even after this fatal prenatal diagnosis, we didn’t want to know the gender of the baby.  This little one was a precious gift from God; we would discover this special gift when he/she would be born.

“In everything give thanks; for this is God’s will for you in Christ Jesus.” 1 Th 5:18. 

This was the Bible verse that God put in my heart while I couldn’t stop sobbing on our way back home.  So, I did, I thanked God for my baby.

How would we be able to tell the kids?  I knew I was about to break their little hearts, they already loved their new baby and they couldn’t wait for him to be born.  Death and sickness is a part of life here in this beautiful but shattered world.  But not us, this was not supposed to be part of our lives!  

We explained to our children that the baby was very ill and that doctors said he/she wouldn’t live.  But we also told them that we had faith in the Greatest Healer ever, Jesus.  While here on earth, Jesus had healed the blind, he had given life back to a little girl.  (Mark 5:35-43) God had created man from dust; surely our God was big enough to heal our baby in my belly.  Even if everything seemed hopeless and impossible, we knew that if God’s perfect plan for our family was to heal our baby, Jesus would heal her.  “Nothing is impossible to God” Luke 1:37.

My husband left later to go to work that day.  I couldn’t bring myself to talk to the kids.  To watch them cry when they understood the harsh reality that their baby brother or sister had so little chances from the medical point of view to recover and live, still breaks my heart to this day when I think about that moment.

I lost no time finding a girl and a boys’ name.  My baby needed a name.

Only a few days later, I had a placenta detachment.  I went to the hospital to make sure everything is not worse than what I’m thinking… The doctor is not concerned and sends me back home while making sure I am getting a follow up as soon as possible with the high risk pregnancy unit.  At our first appointment there, this is where we learned what was truly going on with our baby.  My baby hah Cystic Hygroma and Hydrops and doctors said that it was probably Turner’s syndrome.  We could clearly see this time, the liquid that had accumulated on the back of her neck.  If I chose to believe in this explanation, this would mean my baby was a girl (only girls have this syndrome), so I decided not to think about it too much but to Google it anyway.  Hey, I found hope there!  Babies like mine had completely recovered in their mother’s womb, they were alive and healthy!  We already had faith and had chosen hope…  Our God was Almighty and was able to heal our baby!  All these amazing stories gave me a hope that I could almost touch.  I am still thankful for the mothers of these miracle babies that took the time to write down their journeys and share them.  All of this being said, I still had this gut feeling in the back of my mind that I also should prepare to lose my baby.   So I tried to prepare to give birth to a silent baby or a baby that wouldn’t live for long.  I also started thinking about making a memorial video.  We took photos; my kids who had asked to draw on my belly would draw beautiful pictures for the baby.  I didn’t want to lose a single moment of bonding with my baby, I would rock her, sing songs and talk to her, I would tell her I was here for her, I wouldn’t give up on her, she was not alone, God was also in control and it was okay if she had to go.  A sweet friend also reminded me that God would heal my baby; He would heal her here in my womb or in Heaven.  My children who were feeling the uncertainty and the sadness also could trust that God would heal our baby, our prayers were not useless.



On a Thursday evening, at 24 weeks, I was hospitalized, my placenta was detaching and to prevent any complications for my health, I was put on bed rest.  I remember falling asleep that night and thinking: “This baby is a fighter, his/her heart will never stop.”  Easter was in 3 days, we had a couple family meals planned along with the usual egg painting and hunt.  I was used to be surrounded by my children; I was alone and felt so miserable!   The other pregnant woman with whom I shared the room was NOT happy to share (with me or anyone), I was on the other side of the curtain, and she had the window side.  Being on bed rest was very complicated for my family but I learned I had to trust my God; “Depend on the Lord; trust him, and he will take care of you.” Psalms 37:5.   I had to have faith that being on bed rest for a baby that was more than likely to die was worth it.  My husband did visit a few times so I could nurse our 2 year old.  Finally,  I had a wonderful nurse who found me another room with a beautiful mother that would share her room with me on Friday night.  I remember thinking it wasn’t so bad after all, staying there wasn’t so bad!  A friend to talk to, no meals to prepare, I could finally rest a bit.

Nurses would listen to my baby’s heart twice a day.  Friday late in the evening, I was already asleep and she asked me if I wanted to listen to the heartbeat and I said no, I thought this could wait till morning.  So at about 7:00 in the morning, as I felt the cold jelly and the Doppler on my belly we heard nothing.  I think that I didn’t show any emotions right away, just a timid "awww", but my heart was broken in thousands of pieces.  A doctor checked again with an ultra sound.  About an hour later I called my husband and sobbing I told him our baby was gone.  A few hours later my husband and my children came and they did another ultrasound before I was induced.

I had wished for my children to come back and meet the baby, I was hoping to take pictures of our family, of my children with this small baby they would only really meet one day in Heaven.  My sister arrived just a few minutes before I gave birth, I wanted pictures so badly and she was there to take some for us!


Lily Hope, our precious daughter, was born in Heaven at 1:26 on Easter morning, April 8, 2012.  We had the privilege to hold and appreciate our baby girl in our arms.  I can still feel this sensation on this part of my body and I think it will never leave me.  My children never met their sister, the damages caused by edema were too severe, but pictures of Lily are everywhere in our house now.

The only thing my baby girl Lily ever knew here on earth was our love in my womb, she is Home waiting for me.  She is healed, safe and well. (Ap 21:4)  Lily was not a mistake or a fluke, she is a blessing and a gift from God.  I miss Lily every day, here on this side of Heaven.


2 comments:

  1. Thank you for sharing your precious story...Lily's precious story. I like to imagine both our Lily's sitting together on Jesus' lap. What a sweet gift LIFE is. Our God is awesome, no matter what the circumstances. I pray others see that through your story. Much love and hugs, Hannah Rose

    ReplyDelete

"Children are a gift from God, babies are a reward." Ps 127.3