(Posted January 11, 2021)
I am the proud mama of two beautiful little 22q girls Enjelickiagh and Rebekiagh. They are identical twin 7-year-old girls with a wild heart. They were born in Iowa City, Iowa.
The girls were born 5 weeks premature due to pregnancy complications, they were born emergency C-Section after Rebekiaghs heart rate suddenly dropped and was no longer found on the monitors. Both girls from the very beginning showed their complete differences. Beka showed that she was strong, stubborn, and wildly independent. Whereas Enjelickiagh was a bit lazy, empathetic, and compassionate. After gaining the necessary weight Beka was allowed to leave the hospital while Enjel remained behind. Enjel struggled with eating, maintaining body temperature, heart spikes, and overall growth. After a month-long stay, Enjel was finally allowed to leave the hospital.
Then at 3 months old, I awoke one night to what sounded like a man coughing over the baby monitor. I was a single mother and was deeply scared that somehow, someway, somebody came into my home without me knowing and was about to harm my babies. After quickly touring their nursery I discovered Enjelickiagh who was in her crib, had started to turn blue. I called my mother, she quickly came bringing my brother to stay with Beka so we could drive to the hospital. After a long couple of months, we received a diagnosis of stridors and were referred to ENT. We were lucky to have an amazing ENT specialist that discovered several abnormalities during surgery to correct her stridors. He immediately referred her to Genetics where she tested positive for 22q11.2 Deletion Syndrome. A couple of months later Rebekiagh was tested and confirmed missing the same Dorsal portion of the 22nd Chromosome. According to the geneticist, their separation came extremely late, and therefore their DNA is almost completely identical. Even so, both girls both have their own list of issues and are on an extra caloric intake due to low weight. They both share the following issues:
Breathing difficulties (including APNEA- just underwent surgery for a deviated septum, partial adenoid and tonsil removal and partial Glossectomy, tongue removal). Gastrointestinal issues, lowered immunity, instability of C1 and C2 spine, Speech delays, tonsils removed, stridors, laryngeal webbing, do not make enamel – tooth decay, anxiety, and depression.
And separately, Enjelickiagh: PFO- hole in heart, Heart murmur and Scoliosis and Rebekiagh: Azygous Lobe
They recently we just completed surgery number 4 with flying colors!
School has been especially hard for them. They are bright and inquisitive, but due to frequent doctor appointments and illnesses (due to a lowered Immunity) they miss about 30 to 50 days of school per year. We attempt to supplement with at-home learning but often cover things already covered. Both girls attend regular public school and are happy little 2nd graders, however this year due to the pandemic, we have opted for homeschool online studies, they have been content on staying home and learning. Typically they are the smallest of their class and receive speech therapy through their school, even so, they continue to test well above benchmark.
The girls were once very active in many different sports and activities. Since many recent diagnoses, our activities have been limited to non-contact sports and any sport that manipulates the neck and spine. Due to Scoliosis, Enjel has even been limited in the types of yoga poses that she can do. They both love anything outdoors. They love the parks, playing with their animals, playing with their baby sister, riding their bikes, reading, and playing board games. Enjel enjoys swimming and dancing, as Beka likes to dance and draw pictures.
Of course like everyone we have challenges and we choose live one day at a time. We like to live within the moment and take on new stressors when they arise, this is easier with them because they still don’t quite understand. For myself as their mother, there are lots of tears, laughter, and celebration of all accomplishments. The day they started coloring I was in tears over the moon, I didn’t even care that it was all over the walls.
If you ask the girls what advice they give to other 22qties, they would say, “Keep your heads up kiddos. You are strong and brave.” Enjel: “I’m just like you!” Beka: “You can get through it”. As for me, the advice I would give parents is, “Keep your heads up. Life may be tough at times but it’s about the small moments that make life the most interesting. Celebrate the small things in life. And most of all take time for yourself, take time to grieve because we too need to expel some of the negative energy.”
My goals as a mom are the same as any parent, for my children to be happy, healthy (or as healthy as they can be), and to go on to be whomever they want to be. But as a mother of 22qties, my goal is for them to graduate high school with honors, go off to college, graduate, and become their own person. Whether that’s professional or parent or whatever, as long as they are happy.
Wishing everyone a Happy New Year from our family to yours!