A Preemie Story: World Prematurity Day

Cassie has an infectious smile

Cassie has an infectious smile

Cassie is a beautiful, vibrant and curious baby girl of about 18 months, and is the youngest of five children. Her arrival, however, was much different from her siblings. The celebration of her life had to be balanced with the trauma of her birth.

Nan, Cassie’s mom, had only experienced natural, drug-free birth before then. Her water broke early – too early – at 31 weeks. She went to the hospital and was put on strict bed rest hoping to keep baby girl in for just a few more weeks, but Cassie had her own plans. At 32 weeks pregnant Nan was whisked to the operating room for a C-Section – with Cassie’s leg already through the birth canal. The procedure was complicated by the protruding limb, but after much work by the surgeons Cassie was born weighing in at 3 pounds 14 ounces.

Once Nan began to heal from the surgery she did the hardest thing that one should never have to do – leave their baby at the hospital while they go home.

Nan knew that breast milk would be the best choice for her preemie daughter and her weak immune system, so while she was recovering, and not producing milk yet, Cassie received the blessed gift of donor milk.

Cassie signs "Milk" with her mom

Cassie signs “Milk” with her mom

Nan had an advantage that many moms of preemies don’t have – she had breastfed all four of her previous children. Knowing that she could do it she pumped relentlessly. She hooked herself up every two hours for almost a week. Finally her body responded and she was able to pump her own milk to feed her baby, even though she could not directly breastfeed her. Yet.

As things started to look up Nan and her husband Dan were hit with another obstacle; Cassie was struggling to breathe so she had to be rushed via ambulance to another hospital that was better equipped to help her. This is where the doctors found that she had congenital diaphragmatic hernia, an opening in the diaphragm that allows the stomach and intestines to crowd and affect development of the lungs. At four weeks of age, or what would have been 36 weeks gestation, Cassie had surgery to repair the hernia. Fluid had to be removed from her lungs through a tube multiple times. The breast milk that Nan had been pumping had to be processed by the milk bank to remove the fat so that Cassie’s system could properly digest the nutrients as her diaphragm, stomach and intestines healed.

Cassie still gets important nutrients for her immune system though extended breastfeeding

Cassie still gets important nutrients for her immune system though extended breastfeeding

Nan and Dan took turns being with Cassie in the hospital, having to explain to their older children that they could not visit their little sister. Finally, at two months old, Cassie went home. Her homecoming marked what would have been her original estimated due date.

Cassie and all of her siblings - photo credit to Jennifer Ricca and Deltona Markel.

Cassie and all of her siblings – photo credit to Jennifer Ricca and Deltona Markel.

Nan struggled to get Cassie to latch properly but persevered and is still nursing today. In fact, in her efforts to pump enough milk to keep up with Cassie she actually ended up having so much extra milk that she was able to donate two gallons back to the Milk Bank. She told me that it was a great feeling to be able to help other mothers who might be overwhelmed with the challenges of beginning a breastfeeding relationship with a preemie.

The peaceful face of a full baby after a nursing session

The peaceful face of a full baby after a nursing session

When I met with Nan in August to take these pictures for National Breastfeeding Month Cassie was 18 months old and had just been diagnosed with mild cerebral palsy in her legs. She was not walking independently yet (it sure didn’t stop her from getting around, though!) and was just learning to use her walker. The image of her with her new apparatus is so beautiful and shiny that it inspired the nickname “Golden Girl”.

Cassie is all smiles as she learns to walk with assistance

Cassie is all smiles as she learns to walk with assistance

Since then Cassie has progressed with the help of physical therapy and can finally walk short distances independently. While her lungs may never function like yours or mine, she is tenacious and has so much to offer the world. Her smile is so bright and innocent that you can’t help but look past her challenges and see the beauty and joy that she brings to her family and friends.

If you are interested in learning more about supporting parents of preemies or breast milk donation check out these links:
http://www.parentsofpreemiesday.org/main.html
http://www.marchofdimes.com/mission/world-prematurity-day.aspx
http://www.milkbank.org/