First, do you know what CHD stands for? I know I didn’t 10 years ago. Yet over 40,000 infants are born each year with a Congential Heart Defect and still the awareness isn’t where it should be. When you are at your twenty week ultrasound you are usually hoping for either a boy or a girl. I know I was on “team girl” (hey, I had two boys at home already) but deep down every mother is truly hoping for healthy. At the end of the ultrasound I was 0-2. While unaware at the time, I was starting my journey as a “heart mom”.
While the ultrasound tech, nurse and midwife were trying to tell us not to worry, a level two ultrasound is routine when the first ultrasound had some “inconsistencies” deep down I knew we were going to be in for a bumpy ride.
As typical for many healthcare providers I went into research mode. I wanted to, and had to, find as much information as possible about the defects, survival rates, surgeries and most important – other people to talk to about what we were about to go through. While the internet, Facebook, websites, and Twitter have almost every advocacy group at our fingertips, a mere decade ago it was far from it. So our journey started by documenting our introduction into the heart parent & heart family world to our own family. Our support system of family and friends were at our side each step of the way at the start by reading weekly journals as we learned more information to what we could be facing. When our heart warrior, Owen, arrived four weeks early, our friends and family read daily updates on how he (and mom & dad) were doing.
It is overwhelming at times to reflect back everything that we have been through in ten years. It is also a tad frightening to think about what the next ten will hold as our little guy transitions into his teens then adulthood and starts to bear more responsibility for his health & his condition. Right now I will be happy when he cleans his room – but also know these ten years will fly by.
While this is just a piece of our heart puzzle – here is a quick heart mom summary from the heart warrior himself on everything he has been through this last decade:
My name is Owen Maxwell & I surprised my family by arriving on 3/12/08. I was 20 1/2 inches long and weigh 7lbs 8 ozs. Not bad since I was 4 weeks early! Daddy & Mommy knew I had severe Congenital Heart Defect – and went with me at Children’s Hospital of Wisconsin where they took good care of my heart!
Mommy & Daddy found out at the 20 week ultrasound that I had a heart defect. We were first diagnosed with Hypoplastic Left Heart Syndrome but my left ventricle had an apex there was hope that it just might work when I was born. They also could see that I had a coarctation of the aortic arch and both my mitral & aortic valve were smaller than they should be. After I was born at Northwest Community Hospital, my transport team from CHW got me here safe and sound.
Once in Milwaukee I had two echocardiograms done to see all the details of my heart. Then all the cardiologists and heart surgeons met to talk about what to do with my heart.
I spent the first four days in the NICU getting me ready for my big day. On 3/16/08 I had heart surgery – Dr. Tweddell and his team did a coarctation repair on my aortic arch. I then moved to my new place in the PICU and started my road to recovery. On 3/21/08 I moved from the PICU to the 4th floor. My goal on the 4th floor – eat and gain weight.
On 3/22/08 – after many feedings – it became clear that I did not like bottles. So Mommy stepped up to the plate and tried to breastfeed me. It worked and I never looked back. Each day I gained weight and on 3/24/08 the MDs told Mommy, Daddy, and my brothers they could take me home!
On 1/5/09 I had an echo and looked great – my aortic arch looks great, my left ventricle looks great. Even my valves improved! There are still some issues so when the pressure gets too high – the plan will be for open heart surgery to “clean up” my valves.
On 12/14/09 I saw Dr. Cava for a checkup – and started crying everytime a MD walked in the room. But Dr. Cava thinks everything sounds good but wanted to know what my heart rhythm is doing so I was sent home with a holter monitor. Just before Christmas, Carol – Dr. Cava’s RN, called to say my heart rhythm was normal!
On 4/26/10 I has another sedated echo. This time the MDs were really happy – the pictures from the echo were great and told them exactly what we are dealing with. There is a ring above his mitral valve causing obstruction (and increasing pressures), tissue below his mitral valve and his aortic valve causing issues and his arch is actually looking really good. Unfortunately this information has told the MDs it is time for me to have open heart surgery to clean up the areas around his mitral and aortic valves.
Originally the MDs planned to do surgery on 6/8/10…but Mommy and Daddy were willing to bring me in sooner. Mommy took the call May 7th that there might be an opening next week. Then that Monday we waited and at 1:45 pm they called and asked how quickly we could get up to CHW! Wow…did my mom move fast! We made it up at 6pm…checked into the Ronald McDonald House and headed over for an overnight stay before my big day.
5/11/10 – Open Heart Surgery – Mitral and Aortic valve membrane removal. After a stay in CICU and then the 8th floor – I went home on 5/15/10.
Can you believe it – I went home FOUR days after open heart surgery! Week later I had my post-op checkup. I did great – let Nurse Carol and Dr. Cava listen to my heart without a fuss! Aside from a leaky aortic valve (which has to be watched but not a concern right now) everything looks great!
On 6/14/10 I had post-op checkup #2 with Dr. Cava…the drugs must have worn off because I wanted nothing to do with anyone listening to my heart. While I screamed Dr. Cava tried to listen and did get a real look at my incision & my sternum (it’s a little bumpy). Things were progressing just fine so I got to enjoy my summer and see the good doc in September (mommy worked my manners over the summer…).
Then on 9/20/10 I was on my best behavior & did great – Dr. Cava got to listen. Then was told I didn’t have to see him till 4/2011! So then at that appt (my first non-sedated echo!) Dr. Cava thought things looked so good I didn’t have to come back till next YEAR! 2012! And better yet, no restrictions! Watch out summer, here I come!
April 16th, 2012 we saw Dr. Cava and Carol again & I did great – they took my blood pressures & listened without a peep from me. I even got to start my beads of courage strand! I am excited! Everything sounds good – after an EKG, echo – we are good for a whole year! Then in 2013 I got a great report – and won’t be back till 2014!
My summer 2014 appointment was a MRI. Not really certain what that is cause I was out cold (mom says thank goodness for anesthesiologists). My heart in 3D looks cool. So cool that I still get to have yearly appointments. Visits in 2014, 2015 and 2016 all were big thumbs up!
2017 brought my first stress test! This showed my BP was higher then it really should be so I started my first daily medication – half pill of Lisinopril each night. Hope it does the trick cause mom really doesn’t want to send me to surgery again this soon! Then in early 2018 we did a BP recheck – while it was lower it was still on the higher side so now I take the WHOLE pill each morning. So far so good!
The doctors have my ‘official’ diagnosis as Shone’s Complex – which involves four defects on the left side of my heart. I have those but if you go ‘googling’ remember that there are examples of Shone’s Complex that don’t apply to me – I have my own unique quirks! At some point my mitral & aortic valve will need to be replaced – and we’re hoping it’s when I am a late teen/early adult!