Trace Knight – our little buddy – Inspiration behind Team Trace
On March 26th, 2009 after 22 hours of labor around 10:30pm Trace and his twin sister Maddie were born at Anne Arundel Hospital in Maryland. Trace’s actual name is Kenneth Daryl “Trace” Knight III. Daryl (dad) and Ashley (mom), both wanted to carry on the family name; however, with “Kenneth” and “Daryl” both taken Ashley came up with the clever idea of playing on the third and gave him the nickname Trace which he went by since birth. With Trace it was always his plan, on his terms and we were just along for the journey. Ashley and Daryl have the rare opportunity to be the mother and father to a boy, our little buddy, bigger than life.
Two hours after birth something was wrong as Trace’s reading from the pulsox monitor (amount of oxygen in your blood) was very low. He was immediately transferred to the neonatal intensive care unit and would need to go be transferred in the morning to another hospital that specializes in pediatric cardiology. So after coming in at midnight, 22 hours of labor and 2 hours after birth not knowing what was wrong with our son we had to make a decision as to whether to what hospital to go to – we chose Children’s National Medical Center in Washington DC. Trace and Daddy would go in an ambulance at 6am in the morning to Children’s. And Maddie and mommy would remain at Anne Arundel.
As we reflect back there are two things to note that allowed Trace to survive and further realize he was special. Trace’s delivery nurse placed the pulsox monitor on his finger and it gave a normal reading; however, she did not feel as though he looked good and took the extra step and checked his toe. Had she not done this step and we went home Trace would not have survived the week. Second, our pediatrician had contacts at Children’s and it was ultimately his advice that led us to choose Children’s. We truly believe had we not gone to Children’s Trace would not have been able to have the three great years he did have.
Now we are in panic mode. After 3 days, we met with Trace’s doctors and were told he had Shone’s complex. Shone’s complex is a rare congenital heart disease which can consist of up to four left heart defects. You can be diagnosed with Shone’s, but not have all four defects present. However, Trace had all four defects.
- Coarctation of the Aorta which is a narrowing or constriction of the aorta, the large vessel that carries blood from the heart to the body tissues. Trace would have surgery at 3 weeks old to correct this defect.
- Valvular and subvalvular aortic stenosis is a narrowing of the valve and the channel below the aortic valve connecting the left ventricle to the aorta. Trace would have 5 catheter procedures and three open heart surgeries to correct this defect. Ultimately leading to a prosthetic aortic valve place in June of 2011 and then ten days later requiring the placement of a pacemaker which then required Trace to be on a blood thinner called Coumadin. Being on Coumadin required us to get at a minimum weekly blood tests. Drawing blood on a little guy typically required more than one needle stick and was very stressful.
- Parachute mitral valve is a malformation of the mitral valve, the valve between the left atrium and the left ventricle, in which the two valve leaflets are attached to one papillary muscle rather than two and remain close together. This results in a narrowing of the valve opening, mitral stenosis, obstructing blood flow and causing the valve to resemble a parachute in appearance. During his three open heart surgeries to fix the aortic valve his surgeon also did repair on the mitral valve.
- Supravalvar mitral membrane OR mitral ring is an abnormal ridge or membrane of connective tissue around the circumference of the mitral valve on the atrial side that may protrude into the valve opening and/or adhere to the valve leaflets. This also obstructs blood flow through the mitral valve into the left ventricle. On June 12th after two additional catheter procedures, Trace went in for his fourth open heart surgery to have his mitral valve replaced. He would not come home again.
Trace was the mayor of Children’s Hospital. He spent a year of his life there on and off over his three years. As a result we got to know hospital life quite well. His doctors and nurses loved him. Trace spent the first 4 ½ months of his life in the hospital and while rare, there were a few hours when mommy and daddy were not there. But he was not alone. There was a whole other world at the hospital when we were not there. It was Trace’s world and he had the nurses wrapped around his finger. I (dad) still remember coming in at night and seeing a look of disappointment on the nurses faces. The first few times I would get very concerned as I thought something was wrong. And something was wrong – I was there – which meant their little man was going to be coming back in the room with me instead of sitting out front with them at the main nurse’s station. It was clear early on that Trace was special. We like to think Trace was a trend setter in the hospital as we pushed the limits in trying to make hospital life a bit closer to home life. We built train tracks in his crib, went outside, did countless laps around the hospital in his buggy. Trace also liked to head into the hospital in style.
We will never forget the night of June 5th 2011. Trace woke up at home around 3am in his crib, let out a loud cry and then stopped breathing. Ashley yelled for me, I immediately started CPR while Ashley called 911. The CPR was successful and his blood sugar was low so they quickly took care of that on the ambulance. We were transported to Easton hospital and they started asking me questions about Trace. It was clear we needed to get to Children’s. And so Trace was able to get his helicopter ride and head into the hospital in style.
All in all Trace had 14 surgeries and had a rigorous daily routine. It is beyond remarkable what Trace endured and his strength and will power is truly amazing. Trace’s day started at 5:15am and did not end until 10:30pm at night:
- 5:15am 2 medications
- 6:30am Feed – Trace never learned how to eat and was 100% tube fed
- 9:30am 3 medications and a feed
- 12:30pm 1 medication and a feed
- 1:00pm Nap
- 3:30pm Feed and make his food for the next day
- 5:00pm Medication
- 6:30pm Feed
- By 8:00pm Bath and bed
- 10:00pm Feed while asleep plus 3 medications.
- 10:30pm clean out feed pump and then parents go to bed.
We knew something was different last year coming out of his surgery. It was the first time we allowed ourselves to have thoughts that Trace was “really” sick. Heading into this most recent surgery we were both very nervous and scared, but excited that we might have a multi-year break from the hospital and about Trace starting pre-school in September. He made it through the open heart surgery very well.
However with Shone’s complex you can also have pulmonary hypertension which cannot be correct surgically. While his heart was “fixed” his right heart pressures were still building and his right heart was not pumping adequately. This seemed to be corrected with some medication and he was doing well. So well that we were headed out of the Cardiac Intensive Care Unit and into the less intensive care unit and told that we would come home on Father’s day. Trace had different plans.
On June 15th 2012, three days after his open heart surgery, Trace went into cardiac arrest while sitting on his mother’s lap. Within 30 minutes he was placed on a heart and lung machine (ECMO). The brain trauma from the cardiac arrest was too much and on June 18th Trace passed in his mother’s arms as his life supporting devices were turned off.
For those that were able to meet Trace, they would tell us how in a few seconds he left them with a lasting impression. He was so strong through it all and hid the pain and sickness so well. I cannot recall him ever complaining. In fact, we knew he was in pain and would ask if something was wrong and Trace would always reply “oh nothing” – I can still hear him saying that to me. Even in his final moments he made decisions easier for mommy and daddy as he gave us a signal, by stopping starting breathes on the ventilator, that it was time to go.
You were so loving and went out on top. Always happy and teasing, he touched so many lives. And if you were lucky enough to meet Trace, you probably never knew how sick he was. He hid it so well, and never complained or slowed down. We love our little buddy so much, and would like to thank everyone for the prayers and thoughts. Trace had a great 3 years and was such a special boy. There are so many reminders of him, which are hard to see and think about right now because we cannot have him back, but that is what will keep him with us forever. In three short years, Trace left us with a lifetime of memories and for that we are grateful.
Life without you will be less fulfilling, but you were bigger than life and had a greater calling. I am at peace with the fact that I know you felt loved. Our goal is to continue Trace’s legacy, help others to avoid such a hard life and honor his life forever. In order to accomplish this we have partnered with one of Trace’s doctor’s, Dr. Joshua Kanter who is sponsoring a research project to design a new artificial mitral valve that can be replaced in the cath lab versus open heart surgery. Dr. Kanter performed all 7 of Trace’s catheter procedures and this new valve would have had a direct and positive impact on Trace.