Amy here, writing an update on the precious heart warrior Elina. I came to Kurdistan in December 2023 to step into the role of Coordinator of Nursing Education but what I did not expect was to become part of a small village caring for a little girl with a very special heart.
Her heart condition is one that many would say is beyond help or too challenging to care for because it requires multiple surgeries, heart medication regimens, and ongoing doctors visits. In a place like Iraqi Kurdistan where pediatric cardiac surgery is not an option for a child with her condition, this case is nearly impossible to manage well here. She was born with such a large hole in her heart that she has basically one large chamber instead of two, so this state is medically dubbed “single ventricle”. Additionally, the valve that is supposed to allow blood flow to her lungs is so narrow that for the first 20 months of her life, her oxygen level was far below normal, averaging in the 50-70% range. On top of that, the blood that should go to the lungs to receive oxygen was mostly mixing with the good oxygenated blood and flowing to the body, so that her whole body was receiving semi-oxygenated blood. That was her “normal” everyday status. She also had an abnormally low heart rate that is often not sustainable for long term. All of this together meant that at 20 months old, she was not able to crawl or walk, she was not yet babbling or talking, and she was far behind the developmental milestones for her age. Think of any little ones you know around that age and how active they typically are; Elina was bed-bound and just holding on.
As I am writing this, I cannot help but think back to January 2023 when I was spending days at the local public hospital with her and her mother before we received miraculous help for her life-saving surgery (read about the story here!). It was heart wrenching to visit every day and see this little darling girl deteriorating before my eyes. Lips and fingers so blue, looking weak and tired with rapid breathing that hardly allowed her to drink or eat safely. This little refugee girl who had been through so much had been brought to us for help. How was she still alive? She should have had her first surgery at 3 or 4 months old, but here she was, still fighting and holding on without any intervention. How could we help if we did not have all the funds (>$50,000 USD) at our disposal?
These were the inner struggles of my mind and heart as someone new to Love Them All and new to humanitarian work with children with congenital heart disease in Iraqi Kurdistan. A doozy of an orientation to this kind of work.
Yet – a pivotal moment there in the public hospital comes to my mind and I can’t help but get misty-eyed thinking about it. As a nurse and a singer-songwriter, I have seen the power of music in hospital settings and I was compelled to sing some songs with Elina and her mother. Even though there was a language barrier, the love and care in the melody did not need translating. On one occasion, I began to snap my fingers and hum a little tune. To my utter surprise, little Elina locked eyes with me and began to slowly try to snap her little blue fingers to the rhythm. This precious girl who was hanging on by a thread, with oxygen levels in the 50% range, a heart rate of 35 bpm, and behind in her overall growth and development, she responded to the music. There was a spark in her eyes that told me that she was intelligent and full of life, something so special preserved in her little brain, though she was inhibited by her weak, blue, little body. Undoubtedly, she was still alive for a purpose greater than we knew. It was then, with tears in my eyes and a prayer in my heart, that I knew we had to do whatever we could to help her survive.
Fast forward through the miracles that came just in time to give her a fighting chance and you will be amazed to see how Elina has been thriving since her surgery in February 2023. So many of you rallied around Elina with encouragement, support and prayers. It has meant so much to our team to know we are not alone in caring for her. Now, she is 2.5 years old and is a living miracle. She has had a few setbacks in her health and twice needed admissions to the hospital to remove some fluid from her lungs (which is a side effect of her condition). She remains on several heart medications and takes her doses multiple times each day like a champ! Thankfully, Dr Aso has continued to provide her care and follows her heart function closely via echocardiogram.
With oxygen levels above 80% after surgery, she has had the energy to grow and move! She has gained the strength to crawl and walk with minimal assistance. She is babbling and learning words and her personality is just exploding in a beautiful way. She is catching up on milestones for her age range but still needing physiotherapy and support from our team. Because she was not physically able to crawl at the age when most babies would, and coupled with months of poor nutrition and low oxygen levels, her leg muscles did not develop well. Thorough assessment by orthopedic specialists and physiotherapists helped us learn what she needs to safely get moving, though sadly we’ve been told that her knees are weak and her hips require more support. She will benefit from leg braces while her muscles and bones catch up – these braces are still to arrive but there is at least a plan in place. She is so ready to run and we want to help her do that in a way that is going to promote her long-term mobility.
Dr. Aso also identified on a routine echocardiography this summer that one of her heart valves has a new problem that is making her heart work harder than it should. Elina’s surgeon in Italy has been continually apprised of her condition and she was not happy to hear about this latest development.
So, this sweet girl needs surgery again. Soon. Her surgeon actually called recently and said “It’s time. We don’t want to wait until she is so sick that she can’t fly safely”. You see, air travel is hard on the heart and lungs of children who have congenital heart disease and we cannot wait until she is really struggling to take her for surgery. “Not like last time”, the surgeon said, “we can’t wait until she is as sick as the last time.” It’s true, and seeing her fingers just a little less pink than they were 6 months ago is a sign that we wish we could deny, but her heart needs some help to keep functioning the best it can for her growing body.
This is where we need your help to spread the word. Love Them All does everything it can to aid and support children and families walking through the congenital heart disease journey, however, Love Them All does not have all the funds to provide fully for every surgery of this nature. If only we did! But then we wouldn’t need to engage with the many amazing people who want to partner and participate in this beautiful work. Doing this together is so much more meaningful! We need your help to tell the world and invite those who have a heart to help and the means to contribute in a tangible way.
Before I close, I have to admit that every now and then I go back again to the question – if a child faces such medical challenges, is it really fair to intervene if she is going to face more surgeries and pain and have to work harder than most children to grow and learn?
As someone who has been along on the journey with Elina, I can tell you that she is more than the sum of all these medical diagnoses and surgeries and appointments. She is a beautiful, blossoming little girl who is full of love and light and brings a smile to the face of everyone who knows her. She loves music and enjoys tinkering away at a little keyboard, she knows the actions to “Itsy Bitsy Spider” and “Wheels on the Bus”, and loves to bop along to any toe-tapping tune (yes, even a big fan of the famous “Ms Rachel” YouTube channel). She loves to eat rice (like the good Kurdish girl that she is!) and enjoys a game of peekaboo or hide ‘n’ seek. She loves wearing hats and dressing in pink (seriously – she’ll point to her favourite clothes and choose her own outfits). Her giggle is infectious and she truly has a determination that inspires those on her care team. She is learning to stand on her own two feet and no matter how hard it is some days, she keeps going.
Elina loves life and teaches us to take things one day at a time. She teaches us to love fiercely, laugh freely, and to not hold so tightly to what we think tomorrow should bring. Yes, Elina is worth it and she is a daily reminder of what Love Them All is called to do: to love them all, regardless of the outlook or outcome, without agenda, with only our own hearts being willing to share the burden and walk with those who face the challenges of congenital heart disease in a region of the world that needs a little extra help.
Please consider helping this precious girl continue on her journey of overcoming the next series of challenges of her congenital heart disease. You can donate, or even learn how to start a campaign of your own on behalf of Love Them All from the menu above under “Donate & Support”.
Coordinator of Nursing Education
Love Them All (Canada)