Hey guys! When I don’t have a new spotlight to feature I sometimes like to pull one from the archives. This one is only a couple of years old, but I wanted to re-introduce you to CHARGE syndrome as we’re going to be talking more about it on Monday on Instagram. Be sure to follow me there and in the meantime, enjoy reading about sweet Koko and her family. You can see original spotlight here. Happy Friday!
Holly and Joe are parents to Kokoro, who is a cheeky, happy, musical 18-month-old with a great sense of humour. Kokoro, or Koko, has CHARGE syndrome, which is one of those unexplained spontaneous genetic mutations that occur at conception and result in a range of health issues. For Koko, this means hearing and vision impairment, heart defects and a range of other issues including low muscle tone and missing semi-circular canals which greatly impact her balance. (For more info on CHARGE check out the CHARGE Association http://www.chargesyndrome.org.au/)
Miggy: Welcome Holly! I’m so happy to be featuring you and your sweet family today, especially your little Koko. (That name! I love it.) First, can you take me back to the day you knew your daughter would have special needs? Was it during pregnancy, shortly after birth or sometime later? Do you remember how you felt? Can you compare those first thoughts and feelings with how you feel now?
Holly: The first time that there was any mention of there being possible issues with Koko’s health was during our 20 week scan. During the 13 week scan, I had been labeled as “low risk” and I now look back on the way I approached the 20 weeks scan as incredibly naive. We were expecting some cute pictures and to hear our baby’s heart beat.
Instead, we were told that there were some “structural issues” with our baby’s heart and brain by the technician and then had to wait 8 hours until the supervising doctor was available to give us more information. When he did he basically presented the information as if there was no alternative but termination and my rather hysterical reaction thankfully encouraged him to hand us over to a team of incredible midwives and doctors who specialize in “at risk” pregnancies. However, as it was Friday afternoon no one was around, so we were sent home for a rather agonizing weekend.
Once we begun further investigations and research it became clear that things were not so black and white, and over the pregnancy, it began to appear that our baby’s brain was in fact a variant of normal. However, she did in fact have heart issues. Additionally, we were told that as there were a couple of issues detected, there was an increased possibility that she could have a genetic issue.
As we aren’t religious, we didn’t have a go-to stance on how we would react in this situation and really hadn’t considered it as a possibility. But over time and lots of chats, both my husband Joe and I felt that this baby was supposed to be born and that between us and our support network, we would be able to provide a loving and happy home for her. Her diagnosis of CHARGE unfolded in the weeks after her birth, and initially felt so devastating I wondered at times if I had subjected her to a life of suffering for my own selfish reasons. These days, most days, it is pretty clear that she is a happy kid who enjoys her life.
Miggy: Most conditions have quite a spectrum, therefore can you educate us about Koko’s condition and explain how her needs present specifically? Also, how do her needs affect your day-to-day life?
Holly: The biggest issues have been with Koko’s heart, which required surgery at days old and she will face further surgeries. As her lungs are wet due to her condition, she gets respiratory illnesses frequently and has a base load difficulty breathing. This means she gets sick a lot and every time she gets sick it’s fairly, majorly scary. That said, it has improved a lot over time.
The next biggest thing is her sight and hearing loss which obviously impact the way she experiences life and as a result we have a lot of early intervention appointments. Due to her gross motor difficulties she doesn’t crawl or walk yet, and she can be very needy and need a ton of emotional regulation from me, so it is a little like having a much younger baby (think 3-6 month old), she still wants to be held 90% of the day – which can be both lovely and totally overwhelming and exhausting depending on my mood/tiredness.
Miggy: What are the biggest worries you face for Koko? On the flip side, what are your hopes and dreams for her?
Holly: The reality with CHARGE is that the mortality rate is very high, 1 in 6 kids with CHARGE don’t make it past their 5th birthday. Aside from that (like that’s not enough) my biggest fear is other people; I worry that there is not enough compassion and acceptance in the world and if my daughter will be looked after and loved and included in a way that makes her life fulfilling. I worry, first and foremost, that one day she will tell me that her life has been too full of suffering and that she wishes that I hadn’t kept her.
My hopes and dreams are the same as they are for any parent. That she will lead a happy and fulfilling life and feel in her bones how deeply loved she is.
Miggy: Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situations?
Holly: Koko is a natural born comedian, she makes us laugh every day. When she was 4 weeks old, after I was completely blindsided by a doctor telling me, while smiling, my newborn was “probably blind”, she looked him dead in the eye a did an obnoxiously loud, squelching poop. Koko also had to wear a hip brace for 6 months, so she kind of looked like a sumo-wrestler, and my husband at the time also broke his collarbone and was in a sling. Family outings looked pretty hilarious at this stage.
Miggy: How can people best approach or respond to Koko? Is there something you wish other people knew so as to avoid awkward or hurtful situations?
Holly: I feel like 90% of people come from a good place of wanting to be kind and helpful but they are just so unsure of how to approach the situation. That’s part of why I have an online presence for my daughter, my hope is that if people are more used to difference in public space then they won’t get so awkward and wonder about what to say. I also feel like, it’s obvious when someone means well and then, even if they say something a bit dumb, I forgive it pretty quickly. Then there are the 10% that are just nasty, but that’s life. Koko’s condition quickly weeds out those people you’d be best to have nothing to do with, and then we just let that go and I find those opportunities useful in modeling to Koko how to shrug it off with grace (which I am learning and getting better at with age).
One thing that I find a bit irritating is when people talk about my daughter as if she isn’t there, but I feel like this is pretty common in the way people treat all children, so I don’t think this is about Koko so much as a general lack of regard for kids being human beings. It’s fine to ask what Koko is wearing on her head if you have never seen a Cochlear Implant, but also, be aware that the details of my daughter’s complex medical history aren’t really your business. Just as I wouldn’t ask you for yours unless it was offered. If you are treating her story as a small talk subject and going to give it the emotional weight of mentioning the weather, just don’t say anything. Talk about the weather.
Miggy: If you could say something to the mom who just starting on this journey of CHARGE syndrome, what would you say? What would you say to yourself if you could go back in time?
Holly: I was so desperate to know if my life and my family’s life was going to be one of misery. I felt such huge responsibility for how my decisions would impact my husband and myself and most importantly my child. I wish I knew then that there are really difficult, terrifying moments and sometimes even days, but mostly, we are just a genuinely happy family who feel really lucky to have each other.
I actually made some youtube videos for this reason. I wanted people in similar situations to be able to see what our life looked like. I think it was also kind of my therapy, it gave me a reason to get dressed (occasionally, a lot of them are in my pjs). I look back at them now and find it difficult to watch because there are so many raw emotions in them, but I wanted to try and strike a balance between not glossing over the tough stuff and also letting people see that most of the time, we are pretty happy and cope pretty well. I also instagram @hollyetkoko for this reason, which is how I found you! (if you want to check out the youtubes, google holly et koko)
Miggy: What is the biggest lesson you’ve learned since becoming Koko’s mom?
Holly: Koko has this incredible ability to be in the moment, she has been poked and prodded and messed with by so many doctors and medical professionals in her short life and as soon as it’s over with, she lets it go. She never dwells on her trauma or feels sorry for herself. She laughs all the time and sees the lighter side of everything. I am still aspiring to be that resilient.
The other thing, is how damn lucky I am to be Australian. The health coverage and services we get here are pretty great, I see and hear things that parents of kids with CHARGE are having to shell out for in the USA (like hearing aids!) and my blood boils. We had pretty much the best ENT in the world for Koko’s Cochlear Implant and the something like $18,000 device and didn’t pay a cent. Truly, this is a lucky country.
Lastly, I too will echo the amazing feeling of having pretty much all your health care needs covered as we used to be in the Air Force and when Lamp received her power chair and prosthetic arm in the same day–for a grand total of $20K!–we didn’t pay a cent. We too knew we were very fortunate.
Thanks again Holly! And please give Koko a big hug from me.
As always if you or someone you know would like to participate in the special needs spotlight please email me at thislittlemiggy at gmail dot com.
Have a great weekend!
