My latest “Mom Who Gives Back” is someone I worked with more than eight years ago. Katie Sherman Rawson was not married or a mother back then. She was a young, hopeful, hilarious person with an amazingly positive attitude -personality traits that have helped her cope with one of the most difficult experiences anyone should go through as a parent. I have followed her journey via Facebook and then through her personal blog www.babyhomepages.net/jackrawson, which has had me holding my breath, crying, praying, and cheering for her son “Baby Jack” who was diagnosed with Hypoplastic Left Heart Syndrome (HLHS) in-utero and has undergone three open-heart surgeries in his two years of life.
Tell me a little about your family, your son, and what you do for a living.
I am a 34 year old life-time Washingtonian who works for the Department of Defense at a Command called Strategic Systems Programs (SSP). In 2009, I married my husband, Patrick Rawson. Pat and I both attended Good Counsel High School; he was a senior when I was a freshman. Though we did not meet until many years later, as it turns out, our families have been friends for several decades, and our grandparents were close friends! Pat has been working for Merck Animal health for 6 years this January as a Senior Territory Representative.
Within three months of marriage, we found out we were expecting a baby! We were two very business oriented newlyweds, living in a 700sq ft one bedroom condo. Preparations began to allow for what was soon to become our Baby Jack. On the very first day that I found out I was going to have a baby, I began to document my journey in what I call “Baby Diaries.” I have never, ever been so happy or so excited in my entire life.
I had been told many times that having a baby would be a challenge for me because of my battle with an illness called endometriosis for over half of my life; three surgeries under the top specialists in the country still left me doubled over in pain on many occasions.
Low and behold – although my pain never did go away – I WAS able to get pregnant fairly easily after all! I know that people get pregnant every day… and I know people are born every day as well. However – from conception to my son Jack’s birth and the life he lives today – it has been one miracle after the next.
At my 18 week ultra sound, we found out what I already knew – that my baby was a BOY! I had been doodling the name Jack RAWSON for four months at that point… I knew! This ultra sound lasted over two hours, but nobody would tell me why. The reason the tech was looking so very carefully at the little body inside of my belly, was because the little baby in there was missing half of his heart.
The very first, instinctive questions is – WHAT DID I DO TO CAUSE THIS? And the answer is NOTHING. Congenital Heart Defects just happen, and there is no known cause of HLHS. It took me a long time to believe this, and even now, I still need some reassurance.
John Patrick Rawson aka Baby Jack, was born on September 22, 2010 at Holy Cross Hospital in Maryland. His original in-utero diagnosis of Hypoplastic Left Heart Syndrome (HLHS) was confirmed. Our perfect baby boy had half a heart. During his first two years, he would need three open heart surgeries to reconstruct his tiny, walnut sized heart, in order to survive.
Jack was Baptized within one hour of birth while in a transport device, awaiting his departure to Children’s National Medical Center in Washington, DC, where he would spend the next two months of his life. Jack underwent his first open heart surgery three days after birth on September 24, 2010. For the first two months of his life, he was unable to breathe on his own without the assistance of a ventilator. Due to the patience and expertise of the doctors and nurses at Children’s National, he was finally able to survive extubation and breath. After two months, I was finally able to hear my child cry.
He was sent home, finally, in early November with several life-assistance devices including an at home pulse-ox that we used to check his oxygen saturations, heart beat and also an infant scale to account for his weight; we would transmit his information daily to the hospital, and we had at home nursing come see us once a week. He enjoyed his time at home as his mommy prepared for baby’s first Christmas – only to return right back to the hospital in late December. In December 22, 2010 – Jack proved that you could have two birthdays. He went into respiratory arrest, leading to cardiac arrest, and
actually had no heartbeat. CPR, epinephrine and intubation brought him back to life in front of his mommy’s eyes, and our family spent our first Christmas together in the hospital. In mommy’s words, Jack essentially died and came back to life.
Jack went on to do very well during his second open heart surgery in February 2011, the Glenn Procedure, and was sent home in under one week. Mommy had to return to work after Jack’s second surgery. During his recovery during surgery #1 and # 2, mommy was on leave from the government, receiving Leave Donation from the very generous people that she works with. Daddy continued to work very hard, and helped the family through his strength and endurance out in the sales field.
Jack had his third open heart surgery in September 2012, right after his second birthday. At two years old, Jack rocked through his surgery and came out stronger than ever! He went home just six days post op!
During the time that mom was able to stay home with Jack, it was a magical experience…when you have a heart baby, everything is just more wonderful… each breath, each milestone… and you are so grateful for every moment of time you are allowed. That is how you view life as a “Heart Mom,”… this is the time you are given with your child… a chance you have to experience life with a remarkable fighter for a son.
Please Explain HLHS and the foundation/organization you are involved in that is related to raising money for this cause.
In HLHS, the heart’s left side — including the aorta, aortic valve, left ventricle and mitral valve — is underdeveloped. In most children, the cause isn’t known. Parents who are given this diagnosis for their unborn baby are given three options – abortion; “compassionate care,” which means making the baby comfortable while he or she naturally passes away after birth; or taking a chance on a series of three open heart surgeries in order to reconstruct the baby’s tiny heart. We went with option three.
I am involved in several organizations, but there are two that are the dearest to our hearts. The Mended Little Hearts (MLH) of Washington, DC is the first. MLH of Washington, DC is part of a larger national organization simply called Mended Little Hearts National Organization. MLH is a support program for parents of children with heart defects and heart disease, and is dedicated to inspiring hope in those who care for the littlest heart patients of all. The Washington, DC Chapter is comprised of families throughout the DC metro area. Some of the many wonderful things that MLH does are to distribute care bags to families staying in the Cardiac Intensive Care Unit at Children’s National Medical Center, participate in an annual Congenital Heart Walk, and involvement in many local and national efforts to raise awareness about congenital heart defects. To learn
more about Mended Little Hearts of Washington, DC please visit: http://mlhofdc.mendedlittlehearts.net/
The other group that has been of tremendous support and hope for us, is a group called Tender Hearts. Tender Hearts is an organization whose main goal is to offer support for families who have children with Congenital Heart Defects (CHDs) through events, family and individual support, workshops, and fundraising opportunities.
Tender Hearts organization was founded in August 2004 by three moms who had children with CHDs and has since grown into a large network of support. The group works with families in the entire DC Metro Area. Although TenderHearts is financially affiliated with the Inova Health Systems Foundation (VA), its members visit many hospitals in the area, including Inova Fairfax Hospital for Children, Children’s Hospital of Philadelphia, Children’s
National Medical Center (DC), as well as hospitals as far as Michigan & Boston. TenderHearts will support you and your family no matter where you are! For more information, please visit: http://www.tender-hearts.net/aboutus.html
Both of these groups have offered my family support in very unique ways. For example, we attended our first Mended Little Hearts picnic prior to Jack’s birth. We met families who had already gone through what we were about to go through in terms of having children who had experienced open heart surgery. MLH provided my family with a bag of “Hospital Goodies” and had representatives visit us during our long hospital stay.
Through TenderHearts, I met families who had children with the exact same illness as my son. Suddenly, “extremely rare” became almost normal. I attended a “Moms Night Out,” with other moms in my situation. A TenderHearts representative also personally delivered a hot meal of my choice to my family during our initial hospital stay!
Both of these groups are amazing. They both host seminars for learning opportunities, such as how to deal with PTSD after our experiences; how to cope with stress; who to reach out to in times of crisis. We also learned how older kids with similar illnesses cope with and handle CHDs. If you are shy and prefer to reach out to others online, that is always an option. There are also fun events like picnics, events at the Zoo, and Halloween dress up parties. Basically, these two groups made my husband and me feel normal again.
When did you decide to become an advocate and share so openly your family’s experience with HLHS?
After several months of writing my Baby Diaries, which included entries during my pregnancy after we found out about Jack’s HLHS, I began to feel the need to find other people who were going through the same thing. To be honest, first, it
was me who needed others’ help. I began our new website using some of my entries from Baby Diaries to start, in an attempt to get some type of support and assurance that there were actually babies out there who survived these surgeries, who actually went on to do very well. I put myself out there, and opened myself up to just about anything. I found some extremely happy, positive stories, and some deeply depressing ones as well.
Regardless, I felt prepared, or as prepared as possible. The website I created, as well as Facebook and the families I met in person and online, gave me the strength I needed to get through each day.
As time went on Jack’s heart condition became more and more stable, and I began to see that there were other moms out there, living the nightmare that I had just woken up from, who needed me. I wanted to find these people out there
who needed someone to listen to them; the ones who celebrated each and every tiny milestone their baby makes – from taking their first breath off a ventilator; learning how to swallow milk; coming off various heart medications; and most
importantly, on coming HOME.
That being said, HOME is different for many of the babies who have HLHS – in many instances, HOME is Heaven.
How do you balance your time with your job, your family, your son’s needs, and your involvement in this organization?
I don’t. Who does? As a working Heart Mom, I miss my boy every single second of every single day, as I’m sure all parents do. To make myself feel closer to him, I create little movies with him at night to watch the next day at work. I call him at home and talk to him. I advocate for him, every step of the way, trying to intervene when necessary. For example – My son NEVER eats enough – so I have gotten him county assistance to help us learn to cope with and compensate for this. I was able to get us into a program that gave us a full year’s worth of fortified milk to help Jack grow. Preparations for a heart baby can be difficult, but it also helped me to keep busy, knowing that I was doing EVERYTHING I could to get ready. Little things like… did you know heart babies were prone to having Acid Reflux? So… I made sure Jack had a bassinette that had
a special incline, and bought him special bottles that made it easier to digest milk. I fought with my insurance company FOR MONTHS to get a “hospital grade” breast pump issued to me. I researched his heart disease until my eye balls almost popped out. While pregnant, I wrote a letter to the president of a company called Cord Blood Research (CBR) – a company that collects and stores your baby’s cord blood for possible use later in life. I was able to qualify for five years of free cord blood storage and free initiation. If there was, or is anything extra that I can do to help my child out, I have done it or I will do it. It is amazing what your state and county are able to do for you if you are simply aware of the various programs out there. A very important person to all heart families is your hospital’s social worker.
Please share your hopes and dreams for the future of HLHS?
Initially we were told that our son would definitely need a heart transplant by the time he was around 40 years old. What a punch in the stomach? Just two years later, research has shown that HLHSers can survive on a Ventricular Assistance Device (VAD) rather than a transplant. Eventually there is hope that hearts and heart parts will be regenerated from stem cells/cord blood – so that Jack may be able to actually regenerate his very own heart or valves! Other hopes for the future are the use of pig and other animal hearts/valves, which is already being done. The future is very bright for Jack and other
babies with any Congenital Heart Defects.
If you know anyone who needs support dealing with a CHD, please Connect With Katie:E-mail - firstname.lastname@example.org Personal Blog - www.babyhomepages.net/jackrawson TenderHearts - http://www.tender-hearts.net/aboutus.html Mended Little Hearts of Washington, DC - http://mlhofdc.mendedlittlehearts.net/
If you know of a Mom Who Gives Back, please send an e-mail to email@example.com to nominate an amazing mother with a story to share.