Savannah Lee is an incredibly sweet 2 year old identical twin, heart warrior, tubie, who was diagnosed with Russell Silver Syndrome. Her uphill battle with growth since pregnancy has been challenging but nothing this strong girl can’t handle. At her 13 week ultrasound, it was the first time doctors identified a large discordance between Savannah and her twin sister. From there, we carefully began monitoring her growth. All throughout pregnancy, she maintained a much slower growth rate than her sister and doctors were concerned she wasn’t going to survive. Thankfully, our strong baby girl continued to fight and progress until 35 weeks, which is almost full term for identical twins.

At birth, Savannah weighed 2.8 pounds and measured 15.5 inches. She spent 22 days in the NICU, mostly as a “feeder and grower” and to monitor her body temperature. However, once she came home we started to notice that Savannah wasn’t feeding well. This is when the regression began and became super stressful. She never showed hunger cues and struggled finishing any of her bottles. A few weeks later, she developed a terrible reflux along with a bottle aversion. We just felt so hopeless trying to feed Savannah because she didn’t want to eat and was gaining zero weight.

At 3 months, we were referred to a gastroenterologist and a nutritionist to work on her feeding issues. We tried many different formulas, but Savannah would take little to nothing by mouth and eventually needed an NG tube. At 5 months old, we discovered Savannah had a very large atrial septal defect and would need to have open heart surgery. Her medical team expressed how important it was to have the surgery as soon as possible to determine if the heart defect was the reason she wasn’t growing. Unfortunately, even after a successful surgery she was not growing accordingly and her doctors were uncertain. To help improve her growth and reduce the stress of trying to feed Savannah, we collectively decided to have a G-Tube placed and were able to keep small amounts of formula down. Nonetheless, we wanted an answer to why Savannah was still not growing like her sister so we sought out Genetics to see if something more was going on.

On Savannah’s first birthday, we received the call that she has Russell Silver Syndrome. The loss of methylation at differentially methylated region 1 (DMR1), and upstream of the H19 gene at chromosome 11p15, they were able to diagnose her with RSS. At first, we were extremely heartbroken but found peace knowing we finally have answers of why Savannah struggled so much in her first year of life. We immediately set into motion a plan that we thought was best to help Savannah grow and meet her developmental milestones.

We worked with our state's early intervention program and got Savannah the support she needed. At first, Savannah needed physical and feeding therapy to work on her low muscle tone and feeding skills. She began to walk around 17 months and slowly would eat tiny pieces of food. Currently, she is in speech and occupational therapy and is making huge strides in speaking and eating. We hope to wean her off the g-tube soon!

Most importantly, at 20 months old Savannah’s endocrinologist prescribed growth hormones because she had low muscle tone, no appetite, and overall was very weak. She was 29 inches (less than 0%) and weighed 18.6 pounds (2%). Now after one year she is 35.5 inches (35%) and weighs 25.5 pounds (9%). We were so scared to start these injections and worried that she wouldn’t respond well to them, but we are so glad we did them! They have helped our daughter grow not just taller, but much stronger!

This has been a difficult journey for Savannah, but she is the most amazingly strong heart warrior that doesn’t let her small size stop her from anything! She continues to make us proud and amazes us every time she learns something new. She loves to do gymnastics, go down the slides at the park, and run around with her sisters. Savannah will always remind our family and friends that the best gifts come in small packages!

At first, we felt so alone in this journey, but we now know we are not! We would like to thank the MAGIC Foundation for all their incredible research and online support that it has given all children and their families.