My pregnancy was uncomplicated apart from having gestational diabetes. I had no reason to suspect anything was wrong with my baby. I didn’t enjoy being pregnant and couldn’t wait for it to be over. I could not give birth in the town I live in, so I had to travel to Perth before I hit 36 weeks. At 39+6, I went into labour. After I reached 10 cm and spent hours pushing, I had an emergency c-section. The doctor held my daughter above the curtain that separated us for me to see her. I didn’t know in that moment that she was going to be rushed away.
They took her to check her, and I turned to my partner and said, “She’s not crying.” It was in this moment I knew something was wrong. The nurse came over and said they were taking her to the nursery—which quickly changed to them taking her to the children’s hospital. I turned to my partner and said, “Go with her.” I could see that he was torn. He didn’t want to leave me, but he didn’t want our baby to be alone. I was scared—so scared we would never see her again. He left with her.
I was taken to recovery and then to the ward. I was in and out of consciousness at this time. They were able to bring my daughter into my room briefly before she went to the children’s hospital. She was in a NETS transporter and lying on her tummy. I reached my hand out to put it on her but stopped halfway. I heard a voice say, “It’s okay, you can touch her.” I put my hand on her back, and then they took her away. Twelve hours after my daughter was born, she was diagnosed with congenital heart disease.
I had family come and see me before I was discharged. It didn’t feel like I had a baby—it was like I had any other surgery. I had completely dissociated. The day after my c-section, I was discharged. I walked out of one hospital and into another. I hadn’t been to the children’s hospital before. Unfortunately, we had parked in the car park furthest away from where we needed to be—not great after a c-section. This was the longest walk of my life. We finally reached the entrance to the hospital, and I asked my partner where we needed to go. He said, “Just the other side of the hospital” (which, in all honesty, is not that far—but again, the day after major abdominal surgery, it felt like miles). We finally reached the green lifts and went up to see our girl.
She was almost two days old, and I got to hold her for the first time—but it didn’t feel right. I didn’t want to admit it, but I didn’t feel this rush of love that I was promised. We spent about a week commuting to the hospital to see her. We were able to board at the hospital that night. A nurse came to me and said, “We are trying to get you a room” (they could see how much I was struggling), “but they try and keep them for country families.” In a small voice, I said, “Well, we are country technically.” The nurse then asked where we were from, and I told her. She was not expecting us to be a family from the Pilbara. She asked why we had a Perth address, and I said we had to give a Perth address to the hospital we birthed at, as we cannot birth in our hometown. We had a room that night.
We spent three weeks in the NICU. I cried every day. Our baby had an NG tube, so I had to exclusively pump. I wasn’t getting a lot of milk, and every time we had to supplement with formula, I felt like I had failed her.
I felt guilty for being tired and needing a rest. She was fed every three hours. With pumping, attempting to bottle feed (which always resulted in a tube feed), and doing her cares, there was no time for resting or recovery.
We were discharged with the NGT still in place. My partner and I were trained to tube feed, and we had follow-up appointments with cardiology and a feeding team. Straight after our time in NICU, I was admitted to the Mother Baby Unit (MBU) with my baby and diagnosed with postpartum depression. My time in the MBU could be a whole post in itself—as well as my baby’s heart story.
My daughter had undergone genetic testing while in the NICU, and a couple of weeks later, we were called in to discuss those results. She had a duplication of the 1st chromosome. The doctors in the room couldn’t tell us much about what this meant, and we had to keep a close eye on her development. At three months old, my baby had her open-heart surgery, and at five months old, she successfully weaned off the NGT. She is now almost two years old, and we still see specialists to keep an eye on her. She is now the most beautiful little girl. I struggled with our bond at first. It took us time, but we now have the most incredible bond.
There is so much more to our story, but this is just a glimpse into our trauma, grief, and recovery. Thank you for providing an opportunity for people to share their stories.
Anonymous