Child Loss Journal

I Don’t Regret Breastfeeding My Medically Fragile Baby Who Lost Her Fight

I Don’t Regret Breastfeeding My Medically Fragile Baby Who Lost Her Fight www.herviewfromhome.com
Written by Christiana Whallon

When I was 24 weeks pregnant, we received the devastating news that our precious baby girl had a severe congenital heart defect. She was missing her left ventricle, something that is imperative for survival. Over the next months, we met with countless doctors and went through testing to get more information. One of the first questions I asked was if I would be able to nurse her once she was born. Breastfeeding has always been important to me and I longed for some sense of normalcy and control knowing that nothing about her life was going to be very typical.  

Each doctor usually gave me the same answer, they wouldn’t know if she could breastfeed until she was here and it would really depend on her condition. Some heart babies could nurse but many others are not strong enough.  

Jaylee Hope was born via a scheduled C-section in the middle of June. That day was both one of the most beautiful and also the most traumatizing of my life. Her birth looked nothing like the birth plan I had imagined. 

They pulled her out and immediately put in a breathing tube, before whisking her away to an operating room to save her life.  I was not able to see her until she was twelve hours old and did not  get to hold her until nine days after her birth. 

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While I waited to be able to hold my child,  I pumped. I pumped around the clock because that was one of the few things I could do for her. I hand expressed and then stored colostrum in tiny medical syringes. Once my milk came in, I pumped and began to  fill the Pediatric ICU  freezer. I’ve always made a lot of milk while breastfeeding. I made so much milk for her, but for several days, she couldn’t have it. 

Finally the medical team was able to start feeding her my milk through a feeding tube. Several days after that, the doctor gave me the ok to let her try to latch. Unfortunately, her frail body could not tolerate nursing or even a bottle. 

But I kept pumping. I pumped hour after hour next to her hospital bed. Doctors and others would enter the room while I pumped and quickly apologize, offering to return later. I truly didn’t care who saw me pumping. To me, my breasts were producing something I hoped would help make my daughter healthier. Modesty was the last thing on my mind. 

Unfortunately, nothing could save Jaylee’s life. She passed away at four months and nine days old.  She was waiting for a heart transplant and we didn’t get one in time. 

I remember as I held her while she was passing into the arms of Jesus, my breasts were so engorged. I couldn’t bring myself to pull myself away to pump. After she died and we left the hospital empty-handed, I threw up throughout the drive home. I was falling apart, living my very worst nightmare. My baby was gone. 

But my body did not get the memo. It kept making milk. It seemed determined to keep producing. So I let it. 

I was eventually able to donate several hundred ounces of breast milk to local moms who had production issues. 

Less than a year after we lost Jaylee, we adopted our son. Because of the time I had spent making milk for Jaylee, I have been able  to breastfeed our sweet boy. 

God amazes me how He brings broken pieces together. 

After she passed away, I questioned if pumping  for Jaylee during those four months was worth it. I’ve come to realize that yes, it was worth it. She was worth it. Our kids are always worth it. 

But that doesn’t negate the fact that it was hard. Pumping  is tedious. That my body continued to produce milk after my baby died was  beyond traumatizing. Yet during her life,  making breast milk also gave me a way to feel a part of her fight. I remember one time I wanted to get blood drawn so she could use it when she needed blood transfusions. A doctor told me that many people could donate blood for her; I was the best person to make my daughter milk, I should focus on that. So I did. 

Nothing, including breast milk, could save Jaylee. But I  will always cherish the fact that I was able to nourish her during her short time on earth. And now that same milk is able to nourish her little brother. 

God brought beauty from the ashes, just like He always does. 

About the author

Christiana Whallon

I am a wife and a stay at home mommy to three beautiful children, two on earth and one in Heaven. Our family has come together through God’s grace and our youngest child was brought to us through the joy of adoption. I love traveling, cooking, and being in nature. You can read more about our daughter, Jaylee Hope, and help us celebrate her memory at https://www.facebook.com/JayleesJourneyofHope