Saving Little Hearts

Today's story was written by a friend of the family.

A Beautiful Heart

I first met Jay Tippens six years ago, when we both went to work for a Major Accounting firm.. We became fast friends even though I am some 27 years his senior. I soon came to know and admire Jay’s beautiful wife, Rose, and their two adorable daughters, Madison and Morgan, now 8 & 6 years old. I was just thrilled when Jay told me last year that he and Rose were expecting their third child. Little did Jay and I know that this happy news would be the beginning of a most dramatic and poignant episode.

About four months into the pregnancy Jay told me that an ultrasound had revealed multiple serious defects with the baby’s heart. The Doctor had given Rose and Jay the devastating news that their unborn baby would probably never make it to delivery. That was a dark day, as you can imagine. But the little would-be Tippens defied the doctor’s grim prognosis by stubbornly holding on to life, and continuing to grow normally. And as she grew, our hope grew until on June 24^th, 2005; Kennedy Grace Tippens came into the world with the operating table surrounded by so many specialists and so much equipment that Jay said he could barely reach far enough to just barely touch Rose’s hand as Kennedy’s strong cry filled the room. Seeing and hearing an apparently healthy 6 lb 12 oz robust infant, all the specialist evaporated taking their equipment with them and leaving the head Obstetrician muttering about the unreliability of ultrasounds. Jay and Rose hoped that the ultrasounds had been wrong. But as I visited little Kennedy in the futuristic Neonatal Intensive Care Unit of the newly completed Vanderbilt Children’s Hospital, the ever competitive Jay quipped that if Kennedy’s heart rate in the row of monitors were a golf score she would be way ahead because while all the others were running about 200 beats per minute readings, Kennedy’s was about half that rate. Kennedy required surgery to implant a pacemaker within 24 hours. The doctors initially told Rose and Jay the pacemaker should sustain Kennedy until the age of three or four, when major open heart surgery would be required. But as the months passed crises followed upon crises, until finally at six months Kennedy began declining. Rose and Jay noticed she was having difficulty breathing. Most ominously, Rose reported that even nursing was becoming such a struggle for little Kennedy. Nursing was such a struggle in fact that it would cause little Kennedy to perspire. The decision was made. Eight month old Kennedy needed open Heart surgery immediately.

The day of the surgery, February 25^th, I arrived early at Vanderbilt Children’s Hospital. Rose and Jay entered the surgical waiting room pushing an empty baby stroller. Emotion took my breath, when I first caught site of their brave faces. They looked like two warriors grimly, yet confidently striding onto a familiar battle field upon which many victories had been won,. And indeed they had won many battles here. You see, this was the same waiting room were Rose and Jay had first received the tough news about Kennedy’s heart - the same room where they had waited while Kennedy endured procedure after procedure every six weeks since she was borne, but this was the big one and we all knew it.

Pretty much the same group had shown up for every one of the battles. Two pastors from the church Rose and Jay attended, several of their young friends, and me. I thought of myself as kind of a surrogate parent since neither Rose nor Jay’s parents could be there.

The day would revolve around an hourly status report from the operating room. Each time the call came, Rose and Jay would rush to the phone across the large waiting room. Rose, who is a full foot shorter than Jay, would stand very close to him looking hopefully up into his face as he spoke intently with the operating room. I couldn’t help thinking this must have been the same way she looked up into his face when they had vowed: “in sickness and in health” - “for better or for worse”. That day years earlier they had merely spoken those beautiful words, this day they would live them.

From across the room the rest of us desperately searched their facial expressions for some clue of the news they were receiving. Once, when there expressions had been difficult to read, I realized I hadn’t been breathing as they walked back across the room to give us the details.

From time to time their church friends and pastors would gather lovingly around Rose and Jay, and relay a spoken prayer from one to another. I bowed in deep respect and listened with glistening eyes to their touching, heart felt, and comforting prayers.

The long day wore on just that way until the last call finally came from the operating room eight excruciating hours later. It was over. --- Kennedy was fine. The surgeons reported they were able to accomplish everything they had hoped. Rose and Jay brought Kennedy home only four days later with almost no post-operative pain, needing only a little Tylenol.

The heroic surgical team had repaired a hole between two chambers inside the heart, reconstructed a faulty valve, rerouted cardiac veins, and installed a five lead sequential pacemaker that would make Star Trek’s Dr. McCoy envious.

Kennedy is now a healthy joyous 2 year old, normal in every respect except one – she is a miracle.

The family's story: http://www.caringbridge.org/tn/kennedygrace/history.htm An overview of our story is listed below.

Issues: Dextrocardia with Situs Inversus, 2nd degree AV Block, Sinus Node Dysfunction and pulmonary vein anomaly

At one day old, Kennedy received an Epicardial Pacemaker

OVERVIEW:

2/22/04 Kennedy was diagnosed in utero with massive heart issues. We were told she would not live & if she did, she probably would not survive the surgery to correct her heart.

6/24/04 She miraculously made it to birth & had a pacemaker inserted when she was one day old. She was diagnosed with complete heart block, she had a heart rate of 50 in utero & this has been her normal rate since then (should be 120-180). This has been "corrected" with the pacemaker. She also had a condition called pulmonary stenosis. This was corrected with an angioplasty (9/16/04) surgery.

8/6/04 Kennedy has had some complications with her surgeries. On 8/6/04 she was hospitalized for a diaphragmatic hernia- a life threatening condition where the intestines come up into the lungs. This may have been caused by the pacemaker insertion surgery. In addition, the pacemaker was moving around and had to be stabilized on 11/3/04.

January 2005 Kennedy admitted to hospital for respiratory rate in upper 90's, lung collapse in three separate places- findings consistent with pneumonia. However, Kennedy had no other symptoms- no runny nose, no fever.

February 2005 Cardiologist determined Kennedy's heart was getting larger & progressively worse. We will have to do open heart surgery now versus when she is four.

February 25, 2005 Kennedy underwent open heart surgery. She received a new dual chamber pacemaker- a newer one that is the "Cadillac" of pacemakers. This pacemaker has five leads on her heart versus the one lead she had before. They baffled the pulmonary veins that were going to the wrong place. This is called Partial Anomalous Pulmonary Venous Return (PAPVR). These veins had caused a hole in her heart. This is referred to as an atrial septal defect. The doctors were successful and the problem is now fixed. They also did further work on her pulmonary stenosis that had been worked on last September. All of these things were successful. From now on, we are hoping all she will need is pacemaker maintenance every few years.


May 2005 Kennedy is doing WONDERFUL!! She will have pacemaker maintenance from now on. The only possibility from the cardiologist's standpoint is that she would need valve replacement surgery when she is late teens/early twenties. At this point, valve replacement involves open heart surgery, but by then he thinks the procedure will be much less invasive due to increased technology.