The Story of The Mighty Quinn

 Written in early 2002

          The pregnancy was perfect. We only had one ultrasound, but nothing seemed out of the ordinary and we had no cause to believe anything might be wrong. Quinn was born at home right in our bedroom, right on the bed in which we all sleep, with my closest friends and my mom there to welcome him into the world. It was amazing. Labor took some hours, but at the end when he came out, it was wonderful. We had no difficulties – he just came right out. He looked perfect – 10 fingers, 10 toes, one little penis, a sweet cry and a round moon face.

          Only one thing stood out as being even slightly out of the ordinary: every time I tried to feed him, he would only latch on for a second, then stop and cry. I called the nurse who had assisted in the birth, Judy Breitenfeld, toward the afternoon of the first day of Quinn’s life. I told her he wasn’t eating. She said not to worry, this is common for babies - they don’t always eat at first. She’d be over day after tomorrow to check on him, she was sure all would be well by then.

          The second day he didn’t eat, either, though, and by the second night I had begun to have the overwhelming feeling something was very wrong. I attributed it to myself - my own feelings of inadequacy as a new mother.  I must have been doing something wrong in my efforts to get him to feed – maybe my breasts were too big or I was holding him wrong. He cried hard that night, looking me straight in the eye as he did – as if he were trying to tell me something, it seemed.  I felt that, but I didn’t know what it was he was trying to say to me. His breathing seemed really fast somehow – was this normal? Maybe he was dehydrating.

          Judy was due to come at 9 o’clock the next morning, but was delayed until 11. By then, Quinn was looking a dusky gray. He was having trouble breathing and STILL hadn’t eaten anything, and was continually crying. Judy walked in, took one look at him and suggested we go to Cardinal Glennon Children’s Hospital. She knew the lactation consultant there, and she called ahead to let her know we were coming and to have someone ready. In my mind Quinn was dehydrated, we would get him to the hospital, they’d get an IV in him and get him hydrated, then I could speak with the lactation consultant about what I was doing wrong and remedy the situation. Everything would be fine.

          On the way to the hospital, Quinn had even more difficulty breathing, and by the time we took him out of the car, his eyes had begun to roll up into his head – he was going into shock. We didn’t know that at the time, however, just…things seemed very wrong, and we were glad to have brought him there. We went in to the hospital and as planned, there were two nurses there waiting for us with Denise, the lactation consultant. We went right up to them and showed Quinn to them. Patty, the supervising nurse, took one look at him, swooped him into her arms calmly, and took him upstairs to the NICU. The other nurse, Michelle, stayed with us and took us to the NICU waiting room to wait for him.

          Patty was so calm I didn’t really suspect she was worried, just that she wanted to get him taken care of, but nonetheless, as soon as she took him, I broke down and cried. Josh had been parking the car and he came upstairs with us when we went. In some ways things became a blur after this, and in others they are emblazoned clearly in my mind. 

Judy sat in the waiting room with us to keep us company and to make sure both Quinn and we would be okay. When Michelle DID bring us into the NICU she took us into a room with Patty and several other people I assume were maybe students or something – Glennon is a teaching hospital. At the time I hardly even noticed them, but looking back I seem to remember this room being quite crowded. I think Denise and Judy may have been in there with us – I cannot be sure.

I know Patty had said something about Quinn’s heart prior to this, something about the cardiologist wanting to talk with us. It didn’t really register with me, although Josh was beginning to worry. Dr. Balfour came in them and spoke very seriously and clearly to us, although he could have been singing the ABC’s for all I registered – somewhere in my mind I had shut down and was looking at everything as if from the outside – I was convinced I was dreaming. He was saying something about a heart defect, and I looked over at my husband who was weeping openly. Some part of me wondered why he was crying. This is an odd dream, I thought.

          Dr. Balfour began to draw a diagram of Quinn’s heart and explain what the problem was – Hypoplastic Left Heart Syndrome. A leaky tricuspid valve. He explained very clearly, I remember, though to me he may have very well spoken Greek for all the good it did me. I was just convinced they were lying – they had the wrong family, they had us confused with someone else, this was a dream. I tried very hard to listen to what they were saying to us, but I kept looking at the bordered design of the wallpaper at the top of the wall – the little children standing together pointing at the Cardinal Glennon logo, repeated over and over all along the top of the wall.

Josh seemed so upset – I watched their faces as they spoke to us, telling us why Quinn’s heart was overdeveloped on one side and underdeveloped to the point of uselessness on the other. They were explaining our options. Transplant, a 3-staged surgery, or “compassionate care” (i.e. – take him home and let him die). At some point I did manage to digest “most serious heart defect” and that my son’s life was at stake. I was in shock, denial, all of it. He was just dehydrated, I thought, how did this happen?

We spent the next couple of weeks in the hospital riding an emotional roller coaster – we not only had to come to terms with this, our son having a serious heart defect, but there was the fact that when we brought him in, he was in shock, and the hospital staff now had the job of trying to make him stable enough to even qualify for the surgeries, should we decide that was what we wanted to do. Every little nuance, every little factor affected his candidacy. He had to fight off a couple of infections, he had to recover from shock – his body had begun to shut down from the trauma, they had to bring it back.

We’d get to the hospital around 7 am and leave around 9 or 10 pm, emotionally and physically exhausted, not knowing how much time we may even have with our son, would he even qualify to have these surgeries we were so counting on. We spent our days with him being as positive as we could for him – we spoke to him to let him know we were there, we read him Harry Potter books, we touched him and gently stroked him.

We constantly questioned the doctors and nurses in charge of his care. Was this somehow our fault? No, this is a very random heart defect as far as anyone knows. There is no way to either predict or prevent it. It is only usually detectable by a Level 2 ultrasound, which is only done if there is some complication during pregnancy, some cause to look at the heart. As my pregnancy was perfect, there was no reason to question it.

We had questions every day for them, and they patiently answered every one of them, all the while taking the most gentle and brilliant care of our son, and for that matter, of us. They were never bothered by our constant vigil at his bedside, or the reading of the Harry Potter books, or the barrage of questions, or the steady flow of people who came to visit and support us.

Each day we waited. We waited for Quinn to slowly fight off the infections, we waited for him to get stronger, to be healthy enough to qualify for the surgeries. Our lives were lived in the hospital at his bedside – we scarcely left to eat or use the bathroom. We had no idea if he would live or die, and we didn’t want to chance missing any time away from him. We wanted to be with him always.

Some days were better than others, of course. The first night Quinn was in the hospital he had a seizure from the shock to his body. The neurologist was called in, CAT scans, MRIs and EKGs and such were done to determine the damage. The neurologist’s initial diagnosis was that from the intensity of the seizure he guessed there would be damage – possibly cerebral palsy, which would take Quinn off the list for qualifying for the surgery. We were destroyed. We’d come so far and he’d been fighting so hard, how could this be? He had yet to go over all the tests, though, so we had to wait a day for the final word. We kept vigil and a positive attitude as best we could.

The following day the neurologist visited with a surprised expression on his face. Quinn had small pitikia in his brain, but they were minimal, and he may grow out of any damage he suffered. He would be able to be independent and his cognitive abilities had not suffered as far as he could tell. He was okay, and furthermore, the incident had NOT affected his candidacy for the Norwood. Onward, ho.

The surgery was scheduled for November 2^nd, when Quinn was 12 days old. IT is usually done at about 5 days old, but in light of Quinn’s circumstances they had to wait for him to be healthy enough to undergo such a procedure. We arrived at 7am that day in order to kiss and hug our little man before he went off to the table. Tense does not begin to describe the atmosphere. We parked ourselves in the OR waiting room in readiness to wait.

The surgery was described to us by Dr. Fiore, the cardio thoracic surgeon: they would slow all of Quinn’s vital functions and put him on the heart/lung machine, which would keep his body alive while they performed the surgery. His head would be packed in ice; the ventilator would do his breathing. They would stop his heart in order to clear it of blood while they worked. The surgery itself would take about 15 minutes – all they had to do was place a shunt into his heart to keep it working until the next surgery. The surgical nurse, Barb, would keep us updated during surgery as to where they were in the process.

The surgery went smoothly, and all day Barb kept us updated with, “nothing is really happening, things are going smoothly,” which kept us happy, because in this case, no news really was good news. It was an uneventful, and therefore a good day of waiting for us. Quinn did splendidly.

At the end of the long long day Dr. Fiore came out and let us know how things went. He told us he had been unable to fix Quinn’s leaky tricuspid valve as he had intended. The reason for this is that when he got in there to fix it, he saw that the valve was an A/V canal valve, which meant that instead of the standard 3 leaflets, there were about 13…or some number like that. It would be like trying to sew wet tissue paper and he would do more harm than good to try to fix them, so he went ahead and left the valve alone, saying he would fix it at the next surgery when Quinn, and his valve, were bigger. Other than that everything was smooth. It was finally time for us to see him.

We weren’t quite prepared for how he looked, even though we had been briefed on what to expect. Quinn’s chest was left open in case it would be necessary to go in again within the next couple of days. He looked almost ghostly, so much so that I was impelled to wonder aloud if his soul was in fact actually in his body at that moment. The nurse told us that in fact she thought it was, and that the way he looked was largely due to the paralyzing medication and the sedative they had given him. She told us they all look like that afterward.

Quinn was on a ventilator that was essentially breathing for him, also due to the paralyzing medication and the sedative. He was on much fentanyl for pain, with a sedative and maybe another pain medication as well. He was also on several heart medications to help his heart function. In other words, there were a great many pumps and machines hooked up to him. He had two pacer wires coming out of his chest that could be used in an emergency to start his heart if necessary.  He had drainage tubes as well to drain the excess blood off of his heart, and a Foley catheter for urine output. Then of course the standard leads to keep track of his heartbeat, his oxygenation level, and his blood pressure, all of which showed up on a big monitor overhead so we could watch it and have our blood pressures rise and fall with Quinn’s.

The next day he was doing better, and he improved steadily after that, coming off of the vent within about 5 days. It was a little longer than the doctors would have liked, but better safe than sorry, and he needed the extra help for a while. Once he did come off the vent, though, there were no problems. His recovery went fairly smoothly.

We were in the hospital for almost another three weeks after that. His chest was closed, but got an infection in the wound, so they re-opened the wound and left it open to heal, changing the dressings three times a day and irrigating it with saline. He also had a NG tube through which he was mainly fed, still not having gained enough strength to eat on his own – at least, not enough to sustain himself.

We took Quinn home on Captopril, Lasix, baby aspirin, Digoxin, and NG tube, and dressing changes three times a day. It had been a month since he had been here, born here, and we were elated to have him back home where he belonged. We didn’t even mind the schedule changes of around the clock feedings and meds. He took really well to sleeping at home with us, in our bed – he slept more peacefully than I’d ever seen him sleep, as did we. And amazingly, he slept through the night.

We had to keep him very much in a bubble, so to speak – we couldn’t have any children around him or any adults with colds or other illnesses. His immune system was very fragile, and he was more susceptible to illness than heart healthy kids are. We had a home health nurse come in twice a week to check him. We also had a machine called a pulse oximeter that measures oxygenation level, we used it to check him twice daily and make sure his saturation level was good. His chest remained open after surgery due to an infection that had started, so we still had to change the dressing three times a day and keep it irrigated so it would heal well. It all got to be part of the routine.

Quinn’s second surgery, the Bi-Directional Glenn, was scheduled for February 19^th. He was 4 months old. Normally the surgeons like to wait until a baby is about 6 months old before doing this surgery, but because of Quinn’s leaky tricuspid valve and all the work his heart had to do to compensate, Dr. Fiore opted to do it then. Quinn was gaining weight well and was prime and ready for surgery. And for us, the sooner the better, we wanted to get it all over with so we could go home and live a “normal” life for awhile.

He came through that surgery again with flying colors, and didn’t even take as long to recover – I think we were in the hospital about 8 days before we were released and sent home. He was still on the NG tube when we left that time, and in April we came back for yet another surgery, but this time not for his heart – this time for a G-tube placement. His reflux hadn’t subsided and he never really had taken to the bottle, and I could just forget about him ever nursing at that point – I think he still wasn’t strong enough for it and every time I tried he freaked out and cried, so I just pumped as long as I could and then we ended up switching to soy formula for his gas anyway.

So the G-tube surgery was a breeze compared to the other two – we were only in a week that time if even a week. His little stomach just had to heal and he had to get used to the food going straight through to his stomach and they needed to make sure he could tolerate feedings okay. He did – our little Mighty Quinn, he was so used to this healing process he gave no problems and again we went home.

Over the next several months, life began to get “normal” for us – finally!!! We had no surgeries scheduled, and the cardiology visits and pediatric visits became fewer and farther between, as Quinn has continued to thrive and do well. He doesn’t even catch our colds when we get sick, as he is so healthy! He has had physical and occupational therapy to help him develop those motor skills he didn’t get while he was having all those surgeries, not to mention all the time NOT spent on his tummy because of having a big open chest wound.

As I type this Quinn is 16 months old and we have stopped occupational and physical therapy, he is doing so well! He is crawling for practical purposes and walking all over the place holding on either to us or to the furniture, and he is such a happy and beautiful shining little man. He brings joy to every day I have with him, and I NEVER regret a second of any of the time I have had to spend in hospitals or with doctors, because every bit of his life, every little second, has been a gift, and we have been honored to receive that gift. He is the most amazing hero a person could ever wish for.

This year I think we will have no surgeries – the first year ever of no surgeries – and probably early next year he will be having his Fontan, the completion of the 3-stage procedure to re-route his circulation. For now, we just enjoy every second of our “normal” life together.

Namaste’

Echota

***UPDATE***

I thought about re-wording the previous bit and making it look smooth, but I think I really just want to leave it as is and go on from there. By now you realize that Quinn died on June 9th, 2003 at the age of 2 years and 8 months.

We DID have a "normal" life together there for a long while, and one whole year of no surgeries. That was 2002. Then in 2003 we knew the cath was coming to look for what would need to be done with the Fontan. But we also knew that his tricuspid valve regurgitation was getting worse, and eventually after the cath, we found out that we would not only need to try and repair or replace it, but do it then, ASAP.

My heart sank. My inner me knew that that was it - my first thought was that I wasn't ready to give him up so soon, I wanted more time. I didn't say it aloud, though. because the practical me also knew that I had to do this, because if I didn't give Quinn every chance I knew I could, I would never forgive myself and would always question my actions. So I knew I had to release him into the care of the doctors and into the hospital.

So June 3rd, 2003, we went in for Quinn's surgery. One the weigh-in and vitals and shower were done, I got to hold him in my arms for an hour before he had to go in for surgery. That was the last day we saw him smile.

After a surprisingly smooth valve repair and a smooth two days of transition in the hospital after his surgery, Quinn had a stroke of unknown cause, followed by several seizures. And that was when I knew we wouldn't be taking him home. I knew for sure because when I looked at him, I could see that his fight was gone, and without his fight, I knew he wouldn't make it through. So I prayed that he wouldn't suffer. It was all I could think to do. And I held him when I could. And when I held him, I told him that if he had to let go, it was okay, that we would understand. And that I loved him more than anything, and that he would always be my baby, I would always be his mommy, and that I would always always love him. And I asked him that if he had to let go, to do it when I was there so I could be with him and hold him. And he did.

He didn't die in my arms, but he died holding my hair (his source of comfort) and with me stroking his head and whispering in his ear that I loved him and that I was there. I watched him take his last breath and I knew he was gone, just as I knew the doctors and nurses had to do all they could to try and revive him. June 9th, 2003, Quinn gave up his fight and let go. Half a heart is one thing, but half a heart without a valve is another entirely. He just couldn't do it.

Quinn was our greatest joy and our greatest inspiration. I will always cherish every second I had with him, and will always be grateful for the time I got to share with him. He was my true Hero, my Mighty Quinn.

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