Gigi Khonyongwa-Fernandez is a NICU mom who has found her life’s passion in helping and coaching others after loss and the premature birth of her son who has special needs. She currently owns a coaching and consulting business, Families Blossoming LLC, to assist other NICU families and those with children with special needs. Gigi began her career as an occupational therapist. Then, she continued her work with healthcare project management while she pursued an advanced degree in both healthcare and coaching. She is currently a member of the International Coaching Federation (ICF), the New York City Chapter of the ICF and the Preemie Parent Alliance. This is her story.
What were the circumstances surrounding your child’s birth?
Besides having a twin (fraternal) pregnancy for the first couple of months and losing one twin, my pregnancy post that loss was relatively uneventful. That was, until I experienced PROM at 23 weeks+5 days on the same day that I had my 24 week OB checkup and after I was told “you’re fine and baby is fine.” Shock would be an understatement in describing my feelings when my waters broke.
I was hospitalized, given steroids, was monitored and just started waiting until “27 weeks because your son will have a much better chance then than he has now” – per the doctor’s daily discussions with me. Well, Alejandro didn’t wait until 27 weeks but was born a few days later at 24weeks+3 days via emergency C-section. He was in a transverse position and in distress.
Alejandro was born in London, England (our home at the time) on August 28, 2006 weighing 645 grams. He stayed in the NICU for 5-1/2 months which was followed by re-hospitalizations in the USA due to RSV and multiple retinal surgeries.
What complications, diagnoses or surgeries did you or your child face?
Like many micro-preemies, he had a myriad of complications, surgeries, setbacks, etc. I guess his lasting “gifts” from the NICU were Necrotizing Enterocolitis(requiring emergency surgery, removal of a significant portion of his intestines, a colostomy bag for a few months & resection; Chronic Lung Disease, Rapidly Progressive and Severe Retinopathy of Prematurity (ROP) that did not respond to laser treatment (reason for his legal blindness) and Failure to Thrive. He continues to experience moderate developmental delays.
How old is your child now and how is he doing?
Now he is a thriving, giggly and loving 6 year old little boy who, even though he is still “catching-up,” he is making great leaps and strides with his progress. He’s very inquisitive and currently in kindergarten, is learning Braille pretty well, learning how to use his cane and a whole host of other pretty amazing things, while still being a bit mischievous!
If your child did not survive, tell us about your child and the time you had together.
Counting my twin mentioned above, I have had 4 late 1st trimester/early 2nd trimester miscarriages. I think of them as my four angels. No words can really express the loss. As a parent, you say hello and goodbye simultaneously and feel almost guilty about grieving.
How did your whole family cope with this experience? How are you all doing now?
In the NICU, we were in “survival mode” and basically coped minute by minute and sometimes second by second. We had major ups and serious downs as a couple and as parents. We got through it by our faith (hard at times), communication (even harder), family (from afar) and friends. Also, we made a promise to each other that we “wouldn’t lose each other” through all of this although this was by far easier said than done. Now we are better as a family, but still dealing with the effects of prematurity and now live in a new world that’s just as surreal as the NICU – the world of special needs. Alejandro is legally blind so learns about the world in a whole new way. He constantly teaches us about life on so many levels and in many ways, his “special eyes” are a blessing.
What did you learn about this experience that you’d like to pass on to others?
1) Find your voice as a parent….and use it. It’s often the most true “voice” and advocate your child will have.
2) The rollercoaster doesn’t stop after you leave the NICU. You just learn how to slow it down a bit more.
Is there anything else we need to know?
I am also a Professional Life Coach for Preemie and Special Needs Parents. Inspired by Alejandro, I founded Families Blossoming LLC, which is a unique business specializing in providing coaching-based emotional support and other related services to parents of children born prematurely, parents of children who are sick/medically-vulnerable and parents of children with special needs. It also supports organizations and agencies who serve these children and their families.