Totum Stories: I wanted to prove that I indeed could nurse my child with an extra chromosome
When I was twenty weeks pregnant we found out our baby on the way had a heart defect; immediately after, we also found out she would be born with Down syndrome.
My world was literally shattered. I felt that our lives were about to change for the worse. We were told by the doctor who delivered the news to us that our baby wouldn’t be able to feed herself or clothe herself, that she would be a burden to society and more than likely end up in an institution.
This mama’s heart was broken into a million pieces. We had been longing for a baby for quite some time now, and my daughter was begging for a sister by her side. We had tried to get pregnant but it had taken us more than nine months. Now this doctor was telling us our best choice would be to terminate our pregnancy.
I didn’t want to read anything in regards to Down syndrome, so I stayed away from Google, but as the word spread that we would have a little one with Trisomy 21, people came out of the woodwork with “knowledge” and advice.
I wasn’t thrilled to hear all the things my baby wouldn’t be able to do, including nursing. Some of the causes of having Down syndrome are low muscle tone, which would make it difficult to breastfeed according to all the stories I was hearing.
My first daughter nursed until she was a year old. I had every intention of nursing my second child even if it was six years later.
When our Jordan Grace was born, she latched on pretty well, she was nursing like a pro and I had absolutely no concerns. The nurses on the other hand were doubting me and wanted to make sure the baby was getting enough milk.
I was told I needed to pump and feed her with a bottle. I didn’t agree, but I felt I had to show them that she was indeed eating well.
My stress level was beginning to rise as nurse after nurse would come in even after I had breastfed to tell me that I needed to pump and write down the amounts I was feeding her. I had to oblige or else they would not be able to release us.
Two days later, we were released and sent home with some paperwork that would have to be completed. I needed to prove that the baby was eating.
To be honest, there was so much stress in my life in those moments from the diagnoses to the feedings, that I hadn’t fully thought about how this was affecting the baby or me. I was successfully able to nurse for a few months, and then my milk supply stopped. I was still wanting to prove the professional world wrong, that I indeed could nurse my child with an extra chromosome.
After a few days of tears, pain and suffering to feed my own baby naturally, my husband and I decided it was time to turn to formula. I feel the milk supply must have stopped after my body went through so much stress in not only trying prove I could feed her, but all the stress I had endured for weeks and weeks of mourning the child I thought I was having.
Turns out there are many children with Down syndrome who have successfully nursed. But I also believe that stress cannot help our bodies positively. I’m happy that I was able to feed my baby girl naturally for at least a few months. She got the most important nutrients during the start of her precious little life.
Three years later, I can say with confidence that the doctor was wrong. Jordan Grace feeds herself, gets dressed, learns just like the others, just in her own time. She brings us incredible joy each day. She’s our dream come true in ways we never expected.