“A few months after my son’s first birthday, my husband and I found out we were expecting our second child. We were overjoyed to be growing our family and so excited to give our son a sibling! We found the perfect ‘Big Bro’ shirt for our toddler to wear, made the happy announcement to all our family and friends, and started counting down the days. A few days before Thanksgiving, my husband and I went to my 18-week anatomy ultrasound, where we would learn the gender of our baby. We were filled with anticipation as we squeezed each other’s hand and were so surprised when the ultrasound tech said, ‘It’s a boy!’ We had both been convinced the baby was going to be a girl and when we heard the news, we looked at each other in disbelief. I started thinking of all the fun we would have with two little boys running around together and became even more excited.
After my scan, I had my regular OB appointment, and we went back to the waiting room where we began to brainstorm all the boy names we loved. I was one of the last appointments for the day, so I didn’t think anything of it when the wait became a little longer than usual. After a while, we were finally called back to meet with my doctor.
The conversation started off cheerful but quickly turned serious when my doctor said they had found something concerning on the ultrasound. ‘A Congenital Diaphragmatic Hernia is what it’s called,’ she said. She began to explain they saw our baby’s stomach had moved into his chest through an opening in his diaphragm. That was when CDH, an acronym I had never even heard of, suddenly became a big part of my world. We were told our son would need surgery shortly after birth and would probably require a 2 to 3 month-long stay in the NICU. My doctor explained the overall survival rate of babies born with CDH is 50% and respiratory insufficiency is often the primary cause of death. Closing the hernia through surgery would be the immediate solution. However, due to the displaced organs crowding his chest in utero, our baby’s lungs would probably end up being extremely small and underdeveloped once he was born.
I was confused. We were just going to find out if we were having a boy or a girl. Why was this happening? I sat on the exam table, my husband on the chair beside me, and although I could hear everything my doctor was saying, none of it really registered in my brain. Nothing can prepare you for news like that. We were in shock and a little bit of denial. My husband said to the doctor, ‘We’re not going to worry until we know for sure there’s something to worry about,’ and I agreed. I remember the car ride home so vividly. Other than the rain falling and the occasional squeak of the windshield wipers, it was almost completely silent as we both tried to process what we had just been told.
Once the diagnosis was confirmed by a specialist several weeks later, we accepted it and decided we were just going to pray for the best and try to have the most positive mindset we could. We knew we needed to be strong for our baby, who would be fighting for his life.
The remaining months of my pregnancy were consumed with countless ultrasounds, appointments, and consultations. Being so closely monitored was overwhelming, but we loved being able to see our little boy so often. We put all his ultrasound pictures up our refrigerator and by the end of my pregnancy, it was almost filled! Although they could see some small portions of our baby’s lungs on the scans, there was no way to know for sure how well they might function until he was born. There were so many unknowns with our son’s condition, which made us even more eager to meet him.
On April 16, 2020, at 8:30 a.m., Elias Drew was finally born. He let out a little cry as soon as he came out; that was the first, and last time, we would ever hear him. He was brought over to his bed right away, where he was intubated and sedated. After a little while, the nurses got him all bundled up in his blue and pink striped blanket and brought him over to me. I couldn’t see his full face, due to his breathing tube, but he was still so beautiful, and his little nose was exactly like his brother’s. I was just so thrilled I was able to spend a few minutes with him before he was wheeled off to his room in the NICU. I kissed his forehead and told him, ‘Be brave for me.’ My husband followed Elias all the way to the NICU and was able to spend some time with him while I was taken to my postpartum recovery room. He was sending me pictures the whole time and we video chatted so I could say hi too. I couldn’t believe our precious boy was finally here.
After the longest six hours, I was finally cleared to go visit Elias. My husband pushed me in a wheelchair down the long hallways all the way to the Children’s Hospital NICU, where our little boy was. Seeing my son for the first time in his hospital bed was heart-wrenching. ‘He looks so perfect. How could he be so sick?’ I knew he had a long fight ahead of him.
In the first couple of days of Elias’ life, my husband and I were only able to visit him separately, due to COVID. Our plan for having our son meet his new baby brother in the hospital went out the window and instead, they were introduced over FaceTime. I struggled with the guilt of not being able to be with both of my children together. Both mine and my husband’s parents took turns caring for our other son at home and it broke my heart having to repeatedly leave him to be with Elias. I sobbed every time we left him and during every drive to the hospital. Although we were able to go home every now and then, we primarily stayed in an overnight room provided for NICU parents.
For most of our time in the NICU, we were in a constant state of anxiety, not knowing if our baby would survive. Whenever we were away, my stomach dropped each time my phone rang, fearing the worst. Because of all the equipment he was on, we were not able to hold him. We had to be cautious about even touching him because he would become easily agitated and drop his vitals. Seeing my son cry without making a sound was gut-wrenching. I sometimes had to step out of his room because it was just too difficult for me to watch. I felt so helpless. I couldn’t hold him or comfort him the way mothers are supposed to and that tore me apart. My husband and I took turns sitting beside Elias’ bed, letting him grip his tiny hand around our finger. It was those little moments of holding his hand and staring into his eyes that brought some peace in a whirlwind of fear. We knew he felt our presence and love for him.
Although I spent a lot of time at Elias’ bedside, I stepped away often to pump breast milk. He was receiving TPN nutrition and was not yet able to take any milk. Having a supply of my milk ready for when he would be able was important to me. There was so much I was unable to do for Elias, but pumping my milk was something only I could do for him. It was difficult for me to not be able to take care of my baby the way I wanted to, but we became comfortable with the nurses and trusted them. They made sure to explain everything that was happening and they were a huge emotional support for my husband and me. They were so kind and really went above and beyond taking care of our son. The nurses even made a sweet birthday card for our 2-year old that was ‘from’ Elias with his hand and footprints on it.
When Elias was 3 days old, his condition started to decline. He was having trouble keeping his oxygen saturations in a normal range, even while supported by the ventilator. The doctors decided to put him on ECMO, a form of life support. His brand-new little body was on life support. That was the first day I really broke down in the NICU. After the procedure to place Elias on ECMO was complete, we were able to go in and be with him. My heart broke at the sight. He had two large tubes surgically placed in his neck that were filled with blood circulating through them. It was strange to see his chest laying completely still, as the machine was ‘breathing’ for him. He received a little lamb beanie baby from the ECMO team for being so brave. It was at that point in his journey the NICU staff made the exception for my husband and I to be able to visit Elias together. We were so grateful but scared about what that meant for what was to come.
Elias was on ECMO for a total of 13 days and during that time, he had the surgery to repair his diaphragm. Being on ECMO gave his lungs a chance to rest and develop a bit more but there came a point where the risks of being on the machine were outweighing the benefits. He needed to come off. Elias’ lungs had improved some and he did okay for about a week before he started to decline. His oxygen saturations continued to decrease, and the doctors were very upfront in telling us he was dying. ‘There’s not much more we can do for Elias, and we believe his disease is declaring itself,’ they told us.
On the day he died, I walked into his room and I just knew we were at the end. I looked at his pale face and the mother’s intuition inside of me just knew. We were informed Elias had suffered some significant brain damage due to his low oxygen, and at that point, his plan of care shifted to making him as comfortable as possible and maximizing the time we had left with him.
After three long weeks, we were finally able to hold our son and look at his beautiful face without tubes or wires attached for the very first time. He passed away in my arms on May 8, 2020, at just 21 days old. Although we were completely shattered, there was a sense of peace that filled the room when his heart stopped. There was no more obsessively staring at monitors or beeping machines or wondering if he was in pain or not. We knew he was in heaven and finally free from all of it and that alone was strangely comforting.
In the hours after my son’s death, my breasts began to ache. Elias was gone, but my body didn’t know any different. It was still producing milk for the baby I had given birth to just weeks earlier. It was becoming painful; I had to pump. My husband sat next to me holding our son’s preciously swaddled body while I pumped ounces of milk I knew he would never have the chance to drink. I asked the nurse to call for the lactation consultant. ‘How do I make it stop?’ I asked her, through the tears that wouldn’t stop coming. She pulled out a pamphlet with a picture of a butterfly on the front that was titled ‘Teardrops and Milkdrops’ and began to tell me how I could dry up my milk supply.
‘But…’ she said, ‘some women choose to continue pumping and donate their milk in honor of their baby.’ She explained to me that donated breast milk can save the lives of many premature and sick babies in the NICU who, for many different reasons, are not able to get it from their own mothers. I immediately thought of all the bottles of milk I had stored in the NICU freezer. For weeks, I had been dedicatedly pumping milk for Elias, anticipating the day he would be well enough to drink it. Now I was presented with an opportunity to give it to other sick babies who needed it.
A few days later, I contacted some friends and asked if they would be willing to store some of my milk in their freezers while I completed the process of becoming a donor. They were a huge blessing because, without them, our tiny freezer would not have been able to hold the nearly 600 ounces of my milk. About a month later, after two screenings and a blood test, I was finally approved as a milk donor. I gathered all the milk I had pumped into a big cooler and we brought it to the donation site at the hospital. Handing over all my milk was more emotional than I expected. It was another very real reminder for me that my baby was gone and would not be coming home. I felt the finality of my son’s death all over again.
Although still broken with grief, I was so proud that my son’s presence on this earth would go on to help save the lives of other fragile babies like him. Elias’ life may have been short, but its impact is greater than I ever imagined.”
This story was submitted to Love What Matters by Brittany Kolb. You can follow their journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
Read more touching stories like this:
‘We can’t do anything else.’ I was 18 with a deceased baby. They pulled a drain tube out and her little belly filled with blood.’: Teen loses daughter to congenital heart disease, donates 455 oz. of breast milk to save sick NICU babies
Help us show compassion is contagious. SHARE this story on Facebook wtih family and friends.