Parent Stories
My husband and I were overjoyed when we learned that I was pregnant with identical twins. At my 20-week ultrasound, both babies looked healthy and equal in size. But at 24 weeks, we received the dreaded news that my babies were experiencing twin-to-twin transfusion syndrome (TTTS) with twin anemia polycythemia sequence (TAPS). My twins shared the same placenta, and the blood vessels became abnormally joined so that one twin was being deprived of blood flow and had anemia (not getting appropriate oxygen and nutrients) and the other was getting too much blood flow and had polycythemia (putting undue stress on the heart). After we knew what was happening, I underwent fetoscopic ablation of the blood vessel connection between the twins in the hopes of correcting the condition and saving both twins’ lives. However, during the follow-up ultrasound, it was discovered that one of the babies did not have a heartbeat. My husband and I were devastated. At the same time, we learned this terrible news, we also found out that our babies’ were girls. The gender reveal was supposed to be an exciting announcement, but I couldn’t help but cry even harder. We spent the next 3 weeks wondering if our other twin would die, too.
I delivered both girls at 30 weeks gestation. Grace was born asleep and Greta was born with chorioamnionitis, a bacterial infection. The first few hours were very tense, and the doctors weren’t sure if Greta would survive. But she did. The first time I went to the neonatal intensive care unit (NICU) to see Greta, I couldn’t believe how tiny and fragile she looked. Greta weighed 2 lb 13 oz and looked so sick. She continued to fight for her life, and I trusted the staff to make all of the right decisions for her. I was planning Grace’s funeral, and the doctors and nurses were so amazing that I never thought to question anything.
Greta received my colostrum on Day 1 of her life. She tolerated it so well that her feeds were increased a little each day. To supplement my breast milk, the NICU was able to provide donor breast milk supplied by other moms. Within a few days of her birth, Greta was able to transition from a ventilator to a CPAP machine. She was slowly getting better. A week after the delivery of our babies, we held a funeral for baby Grace, and when I returned to the NICU, I couldn’t believe what I found. Beside Greta’s incubator was a syringe labeled “Similac.”
I panicked. I called in the nurse and told her to stop the feeding until I could speak with the neonatologist. She explained that what was in the syringe was a fortifier.
I understood the need to fortify my breast milk to increase the calories, as breast milk alone averages about 19 calories an ounce and preemies need a minimum of 24 calories an ounce to grow and develop. But in the days prior to this, I had spoken to my lactation consultant, who had mentioned Prolacta’s 100% human milk-based human milk fortifier. All other human milk fortifiers were made from cow milk, she said. I had heard that there was a connection between premature babies being fed cow milk fortifiers or formula and an increase in necrotizing enterocolitis, and I wasn’t about to take a chance with my only surviving baby! I wanted to keep Greta on a strictly human milk diet. Greta was already so fragile and little that I couldn’t imagine her having to fight a disease or endure a surgery. The neonatologist assured me that they would hold off on fortifying my breast milk until the next morning, so that I could have time to sleep on it. I spent the night calling up my own doctor to seek advice, speaking to another neonatologist, and conducting research online.
The next morning I was ready to advocate for my daughter. But to my surprise, the doctor came in that day saying she was willing to try Prolacta’s fortifier. I was so relieved! She said that if Greta wasn’t gaining weight nicely, we would need to have another discussion. However, Greta began to put on weight slowly and steadily. As each day went by and she became stronger, the nurses all commented on how pleased they were that she didn’t have any “gut problems.”
When it came closer to discharge, we started giving Greta just my hindmilk for higher calories because Prolacta fortifier was not available to take home. The lactation consultant tested my hindmilk, and it was 27 calories an ounce. Greta was then able to come off Prolact+ H2MF® human milk-based human milk fortifier and go home.
I am glad that I was able to advocate for my daughter. She is now 8 months old and thriving well. Looking at her now, you would never know she had a rocky start in life. I was so thankful that there were moms out there who took the time to pump and donate their breast milk for my Greta that I decided to become a donor myself! I now donate my excess breast milk to Prolacta in memory of Grace and to ensure that every preemie has the option of receiving a 100% human milk diet.