top of page
  • Writer's pictureMother of Wilde

"I Chose Life for My Baby with Caudal Regression Syndrome."

Mother of Hannah:

Our journey began in Uganda, East Africa.

After nearly 2 and a half years, my oldest son and I were reunited with my husband. It was less than a month before we found out that we were pregnant again. Given that this was our second pregnancy together, we had faith that all would go well.

Never did we think that something could go wrong.

Everything with this pregnancy was seemingly normal until around 14 weeks.

I ended up having an ultrasound where it was noted that the amniotic fluid surrounding our baby was diminishing. By 17 weeks gestation, there was no measurable amniotic fluid surrounding our baby.

In the second trimester, it was deemed as "olyhydramnios.” The complete loss of amniotic fluid meant that our baby would likely pass away because there would be no way for the lungs to fully develop without amniotic fluid.

We weren't exactly sure what was going on.

It was so scary to be in the position of knowing that nearly half way through pregnancy, our baby likely wouldn't survive.

We made the decision that if our baby still had an active heartbeat at viability, I would travel back home to Canada with my son to receive medical care for myself and our unborn child but that decision meant that my husband would not be able to travel with us.

Mom holding daughters hand who has passed away

Once my son and I arrived back in Canada, I sought medical care immediately.

We were fortunate in the coming days after to be accepted into a high-risk, Fetal Development Clinic.

Alongside a team of professionals and doctors, we received the “official” news at 26 weeks gestation that our unborn baby was in fact not going to survive and had less than a 1% chance at surviving.

The condition was initially assumed as "bilateral renal agenesis" meaning that our baby did not have kidneys present.

There was also a heart condition showing but there was no further way of knowing if anything else was wrong because there was a lack of visibility during ultrasounds due to the complete loss of amniotic fluid.

We were given the choice to continue on with the pregnancy or induce early. We chose to continue on.

We requested for our baby to have medical intervention after birth in order to be further assessed. We managed to make it to 37 weeks and 4 days before our baby was born via elected C-Section.

That meant that for around 20 weeks out of my pregnancy, our baby was without any measurable amount of Amniotic fluid. The C-Section went smooth right up to the birth of our second child.

Our baby was born alive and breathing.

There was even a cry heard that was initially assumed to likely not be possible because of the underdeveloped lungs.

Newborn girl with Caudal Regression Syndrome

Straight away, panic set in as our baby was whisked away for medical intervention. I remember being taken into recovery where the geneticist on call came in to tell us the news. After doing an ultrasound for further assessment, our baby had much more complications than initially assumed.

"I'm sorry, but your baby's gender is unknown".

"It was confirmed by ultrasound that multiple organs were missing, including the kidneys”.

“The oxygen level in the blood was far too low."

Although there was complete shock after what we were told. We knew that we wanted to give our baby an identity.

Our daughter, Hannah Rose, was born on April 7th, 2022 and went to heaven in my arms after 5 hours and 4 minutes, just 5 days before my own birthday.

She was surrounded by loved ones including her big brother. Hannah never had the chance to meet her daddy.

After 8 months of living life without her, I have realized that life after loss is completely devastating but that healing is possible. For the rest of our lives, we will miss her. But despite the pain endured, fighting for her life was worth it.

In every single way. We have gone forward with genetic testing but currently there is only an assumed diagnosis based on factors and symptoms that were present. Hannah is thought to have "Caudal Regression Syndrome".

We hope that with genetic testing, we can eventually have a confirmed diagnosis but we know that unfortunately, we may never have full answers.

We firmly believe that God carried us through this difficult journey.

In 1 Samuel 2:4, NIV: "Then Hannah prayed and said... the bows of the warriors are broken, but those who stumbled are armed with strength."

Our Hannah Rose will forever be in our hearts.

Mom holding daughter with Caudal Regression Syndrome

This blog was written by Melissa Irene from Ontario, Canada. Melissa and her husband have two children together. Isaiah, who is earth-side, and Hannah, who in the arms of Jesus.


bottom of page