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May 5th, 2002
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Baby Royce
Hello,

I am so sorry to have not updated all of you sooner, but so much has happened in the past few weeks, and to be honest, I still find this difficult to do.

Unfortunately, I don’t have any good news to share with you…please forgive me if this message seems a bit disjointed, but I am still not sure exactly what to say.

I cannot think of any easy way of telling any of you this, so I will be direct.

Our baby son Royce, born on April 8th, passed away on April 22nd.

I wanted to tell you all that had happened these past weeks, so that all of you will know.

Baby Royce had a very difficult delivery.  To be blunt, he got stuck.  As a consequence he was deprived of oxygen for longer than he should have as a result, and as a therefore several of his internal organs sustained varying degrees of trauma.  That was the biggest concern in the NICU (Neonatal Intensive Care Unit)  at first, exactly what was affected and how much.

I will tell you that we have heard from more than one source that this is an obstetrician’s worst nightmare, the baby getting stuck at this crucial juncture.  It eventually became ours as well.

There was some evidence that despite being tested negative, Bridget may have still had a touch of gestational diabetes.  The main evidence is Royce’s birth weight, being 7 lbs 11 oz at only 35 weeks, and that after birth he was very hypoglycemic and the staff at the NICU had a problem getting his blood sugar/insulin levels under control.  Babies born to diabetics are fine in the womb; when they come out is when the trouble starts.  However, there may never be enough evidence to prove that there was indeed gestational diabetes.

However, it could have been his large size combined with the fact that Bridget actually had a smaller pelvis than anyone would have though for a woman of her size that may have been the connection to why he had so much trouble during delivery.  Royce suffered what is known as shoulder displasia; his shoulder got jammed up against Bridget’s pubic bone after his head had come through the cervix.  This is the critical period for babies where they don’t get any oxygen…a few seconds isn’t a big danger, but longer periods are obviously bad.  Bridget was pushing, had FOUR nurses pushing down on her belly and the doctor pulling on Royce to get him out ASAP.  He wouldn’t start breathing on his own for a long time after he did finally come out.  His Apgar scores were dismal...he only progressed from a 1 in his first minute to a 2 in five, and only to a 3 at ten.  The first noticeable physical sign of trauma was that he suffered nerve damage to his right arm from the delivery, and he was unable to move it.  This was an issue that would have eventually have to be addressed, likely with physical therapy, to possibly regain at least partial use of his arm.

Though he was confirmed to be able to breathe on his own, it was decided by the neo-natologist to have a respirator assist Royce in breathing for the time being, if only to give him a break due to the other problems he was having, as he was still considered unstable at this time.

The first order of business after they had Royce in the NICU was to get his blood sugar/insulin levels under control.  Initially, the neonatalogist had to give him three times the normal glucose solution levels to stabilize him.  This caused Royce to be endemic and swell up with fluid quite a bit…this is evidenced in his first pictures you might have seen when he was only 12 hours old.  He had not started to pee…a sign of kidney trauma, and that was not helping at all.  Finally, after nearly two days, he had begun to pee, and in quantity…. much to the relief of all!  Slowly, the swelling began to lessen.

Royce was also suffering from an infection.  His white blood cell count was actually low and he had a slightly elevated temperature.  He may have had the infection in utero, but they will never truly know this.  They pumped him full of antibiotics and within a few days had gained on the infection…and the antibiotics also prevented them from ever getting a culture of whatever it was to identify what was causing the infection in the first place.  The main thing was that he was recovering from this.

All newborn babies have elevated levels of bilirubin in their blood, particularly after about the third day of life.  Royce was no exception.  Bilirubin is a byproduct of red blood cells as they break down.  You see the presence of bilirubin in the body by the yellowing of the skin, commonly known as jaundice.  You may see some yellowing around a bruise after a day or two, and this is the same thing.  There are two types of bilirubin, conjugated and non-conjugated.  The non-conjugated is easily broken down with ultraviolet light, and it is common practice to basically give the baby a tan with his own personal UV unit, looking as if the baby is in a tanning bed!

However, bilirubin is naturally processed through the liver.  If liver’s ability to process bilirubin is impaired, this is where jaundice can bee a real problem…liver damage due to alcohol abuse is a classic example.  Though Royce’s jaundice cleared up well with his “tanning bed” sessions, his conjugated levels of bilirubin were still a bit elevated, a sign that there may be issues with his liver as well.  More on this later.

Initially, after he was in the NICU for his first few hours, he had been active enough that the staff decided to sedate him so as not to risk having pull out an IV or something.  Between the sedation and the covering of his eyes while under the UV light, we didn’t see his eyes open yet.

The first and foremost problem in regards to Royce’s continued survival was his kidney function.  Even though he was still peeing, there were elevated levels of waste products in his blood that were still steadily rising…these waste products are normally cleansed out of the blood by the kidneys.  The presence of these levels indicated some level of kidney impairment.

Finally, after a week in the NICU, it was felt that he was stable enough that they could finally do the CT (commonly known as “CAT”) Scans they wanted to perform on him earlier. 

This is where the real trouble began.

After the neonatologists viewed the scans, there were a number of problems. 

The scans revealed strange dark areas dispersed throughout his liver that they couldn’t identify.  Other than the elevated bilirubin levels in his blood, his liver function remained normal.

The most distressing news was that there were several small areas in his brain that were tentatively identified as infarcts, small areas of bleeding.  They were on both the left and right hemispheres of his brain.  This was not an ongoing event…it was already over and the damage done.  The likelihood of brain damage was high.  We were quite upset at the prospect of this.

It was the recommendation of the neonatologist that because of the multiple issues, kidneys, liver, blood sugar/insulin levels and bleeding in the brain, that Royce be transferred to a facility that could better assist him.  That place was Egleston Children’s Hospital in Atlanta.  Located on the Emory University medical complex, it is the finest facility of its kind in the SE USA.  Onsite are pediatric specialists in just about every part of medicine.  Things like organ transplants occur regularly here.  If there was anything that could be done for our son, this was the best place for him now.

So the following day he was transported to Egleston.  Because of distance, Bridget and I were able to stay at the local Ronald McDonald House, located just over a mile from the hospital.

Whole batteries of tests were ordered by the neonatalogists in the NICU at Egleston, some also by the specialists that came to examine him.  A number of ultrasounds were performed on him the very next day, as well as an MRI of his abdomen and brain.

Finally, on Friday, we began to get some clear pictures of exactly what we were dealing with.

The first visit was from the nephrologist, i.e. a kidney specialist.  He informed us that Royce’s kidney function had in fact improved since he had come to Egleston, and his prognosis was that Royce was likely to eventually regain full function of his kidneys.  Sounded good to us!

Next was the liver specialist.  The dark areas in the liver were still a bit of a mystery, even after the ultrasounds and MRI.  They could rule out that they were in any way vascular-related, no blood flow.  It was postulated that it was perhaps “dead” areas that resulted from trauma to Royce’s liver much like the trauma to his kidneys.  If so, since the liver could partially regenerate itself, it could likely also fully recover.  Further investigation would require something invasive like a biopsy, but since his liver function appeared to be good, it was decided not to risk any reversals by performing such a procedure at that time.  But even so, we felt that this most likely be a good outcome eventually.

An endocrinologist had also examined Royce.  His insulin output was still sky-high and was difficult to control the levels of his blood sugar properly.  They kept fluctuating.  It was possible that the worst-case outcome would be the partial removal of his pancreas to level out the insulin production.

Basically, at this point, there was some kind of long-term solution for all of Royce’s physical problems.

Then we talked to the neurologist.

Our worst nightmare had come true.

The MRI revealed that the areas of bleeding in the brain, though quite small, were also quite numerous and scattered throughout both hemispheres in both the gray and white matter, especially in the white matter areas, which govern motor function.  One of the ventricles also had blood in it.  The prognosis was extensive brain damage and likely a severe impairment of motor and cognitive function.  Worse yet was the fact that since he was at Egleston, Royce had not yet opened his eyes, despite being off all sedation.  The longer this went on, the more severe his brain damage was likely to have been

Bridget and I were devastated.  We now had to consider scenarios we had not even remotely considered only the day before.  We agonized all weekend about our options.  We decided that we would seek a “second opinion” from the other pediatric neurologist at Egelston, if nothing else but to clarify things and approach the issue from another perspective.  We felt that if we were gong to have to do something drastic, we owed to ourselves and especially Royce that we do this.  Bridget and I could accept Royce being wheelchair-bound, and likely both mentally and physically handicapped.  But, if things were indeed that bleak, that the brain damage was so severe that Royce would never open his eyes, or be in a vegetative state for the rest of his life…well, that was no kind of life. 

That Sunday night, I was able to spend some quiet time with Royce in the NICU, just the two of us, father and son.  I spent the time touching him and talking to him.  This is a time I will cherish forever.

Things we sort of decided for us Monday morning.  Early in the Morning, Royce developed a high fever and began to retain more fluid.  He was suffering from a new infection.  Though Royce was capable of feeling pain, he was in no real pain; but then again he was felling increasingly uncomfortable.  He was now totally dependent on the respirator to breathe.  It was possible that he could get much worse in a short time, considering how quickly his condition changed in just a few hours.  We also talked to the other neurologist that morning, and he basically told us the same thing his colleague had told us, and was very helpful in clarifying things.  Both Bridget and myself finally decided it that we could no longer allow his suffering to continue.

We were fortunate to obtain a priest on short notice and perform a Baptism, Confirmation and Last Rites of the Roman Catholic Church.  We signed the necessary papers.  The NICU staff prepared Royce by cleaning him up, changing his diaper, and putting on a cute outfit.  They then injected both a sedative and anti-anxiety medication to make sure he would be comfortable and not feel any pain.  Then it was time to remove all support, including the respirator tube.

We had the option of holding our baby in his last moments.  Bridget refused, the experience being too much for her to handle (and I cannot lay blame on her for feeling this way).  So I took on the burden/joy of holding my son for the last time.

I was able to truly see my son’s face for the first time…truly see it, without any tubes or tape in the way.  He was so beautiful!

I sat in the rocking chair, holding my son, tears streaming down my face.  Bridget was right there crying as well, as were my mother and sister.

Our son was stubborn; he was fighting to breathe.  I whispered to him that it was OK, to stop fighting it.

I had always looked forward to singing to my son, and I tried to now to sing to him…but my voice, hoarse from crying, failed me.  I was physically unable to sing to him the song now going on in my head.  All I could manage was to croak out the melody by softly humming it to him in his ear.

His breaths gradually became less frequent and more ragged.  The end was finally drawing near.

Royce made one last great gasp, then quietly slipped away.  I knew that he was gone, and I cried out and began to sob uncontrollably.

My son looked so peaceful in my arms, as if he was simply asleep.  It was hard to believe that he was actually dead.  I continued to hold onto him for quite some time afterward, but eventually relinquished him to my mother, who also wanted to hold him a bit.

Eventually, we had to say goodbye to our son and leave the NICU.  I gently laid him back into his bed and we all kissed him goodbye.  After pulling up his blanket over his head, we all turned away and left him behind.

At the suggestion of the neonatalogist, and autopsy was performed in hopes of getting some idea how all these things happened to him.  It may be some time before we have all the information, and we may well never know everything we wanted to know.

We had a memorial service for Royce at the Egleston chapel, with just our families in attendance.  It was short and sweet, and I feel a fitting tribute to someone who was here for such a short time yet affected us all so much.

We had his body cremated.  We are not sure what we are going to do with him yet, but having his ashes with us gives us flexibility in making a decision later.

As I finish writing this narrative of our odyssey with our son’s birth and death, it has been 12 days since he has passed.  Part of it feels like it has happened a lifetime ago already, while my emotional side is still raw with the very fresh and vivid pain of loss.

I feel that summarizing the events of the last few weeks has helped me in my healing process, and also serves to get everyone one the same page.  I have gathered that people that have already known about Royce’s difficulties and subsequent passing have all heard different things, and through word of mouth have been distorted.  I wanted everyone to know in a nutshell what really happened and to do my son’s memory some justice.

For the record, Bridget and I do intend to try and have children again, but we intend on waiting a just little while she loses some weight and gets healthier (as will I). 

Both Bridget and I wish to thank all of our families and friends who have comforted and supported us in the past weeks.  Thanks as well to all of you who have wished us well through your calls, cards and emails.  You have our gratitude.

Thankyou and God Bless,

Bill, Bridget and little Royce
ROYCE WILLIAM AUGUSTUS KARGEL
April 8th to April 22nd, 2002
Rest in Peace, Baby Boy...
Be sure to visit Royce's Memorial Page HERE
Go to Royce's Memorial Page HERE