Seizures

The preparation for the EEG turned out to be the first of many stressful experiences for new parents. The technician proceeded to place nearly 20 electrodes all over little Declan's little head (mommy couldn't bear to watch this, as it looked like a craniotomy patient with all these wires and gauze wrapped around such a small and precious little head.) About 15 minutes into the 60 minute test, the indelicate technician decided to "diagnose" what she was seeing and exclaimed how many seizures little Declan was experiencing. This immediately sent mommy over the edge (and Daddy too for seeing what an insensitive person can do so quickly!). We would later find out that this EEG was "markedly abnormal" and certainly was the beginning of what was to be the longest, most stressful and painful 48 hours that Michelle or I have ever experienced!

Declan had at least one more visible seizure during the EEG and near the end had a choking attack that might have been associated with a seizure as well; he wasn't breathing initially and had an absolutely terrified look in his little eyes. Before I knew what was happening, a NICU nursing crew whisked Michelle and little Declan away to the neonatal intensive care unit. I packed up what I could and rushed down to find them on the 2nd floor.

NICU

Simply put: there are not many other three-day old babies as tough and strong as Declan Mark Wirnowski. Through all the tests and procedures Declan displayed amazing strength and courage - something that helped me through all these tests. One very unique aspect to neonatal medicine is that the doctors must begin treating the symptoms before they know what is actually wrong, because with babies as young as this, there simply is not enough time to figure things out and then treat the problem. These seizures could have been caused by such a wide range of things that before we knew it, Declan was plugged into an IV and on two separate antibiotics, an antiviral and had started receiving Phenobarbital to treat the clinical seizures. As if this wasn't enough, the doctors had already ordered a cardiac echogram and CAT (computer-aided tomography) scan of Declan's brain.

Still needing to rule out any form of spinal infection, Declan underwent a very painful lumbar puncture procedure by Dr Chen. I simply could not let our little son go through these tests alone, and although it was extremely hard to watch, I was at Declan's side through every test that he underwent. Michelle, while wanting to be there as well, as far too exhausted after delivering little Declan and nearly four days without any real sleep.

While the heart echo came back clean and very normal, the CAT scan was anything but. Showing signs of a vascular accident (stroke), there appeared to be blood in both ventricles and the choroid plexus of Declan's brain. With two abnormal tests results, the doctors ordered a rush MRI (magnetic resonance imaging) scan which would provide much more detailed resolution on his brain and would hopefully shed some needed light on what was happening to our new son. The MRI was completed on a tranquilized Declan to make sure he remained still during the entire scan and confirmed what the doctors had believed from the first two tests: something was seriously wrong with our little boy. On top of the abnormal results seen in the EEG and CAT scan, both lumbar punctures ran bloody indicating that there was blood surrounding Declan’s brain – a likely sign of a neonatal stroke.

Sturge-Weber Syndrome

Dr. Tan was the staff neonatologist on Thursday; he received the results of the CAT and MRI scans and had consulted with the hospital's radiologists before sitting Michelle and I down in a private room. "Ginger" Fiock - Declan's (and our) nurse - asked if she could be with us during this time to serve as our second set of ears and to help us with anything. Dr. Tan reviewed the actual MRI films with us and gently informed us that little Declan had suffered a stroke at or around the time of his birth, resulting in small amounts of blood within his brain. Worse, the MRI scans also displayed clear evidence of a variant of Sturge-Weber Syndrome (SWS) - a rare, congenital condition that affects the skin and in more serious cases (like Declan) - the brain.

As described in medical manuals: Sturge-Weber Syndrome (or disease) is a rare, congenital, and progressive condition that affects the skin and in more serious cases - the brain.

Characteristically, a large pink to purple hemangioma (a birthmark caused by abnormal distribution of blood vessels) extends over one side of the face, including the eye. A similar malformation of blood vessels in the brain may cause some degree of weakness on the opposite side of the body, glaucoma, and epilepsy. In some cases, strokes may occur. Developmental delay of motor and cognitive skills may also occur to varying degrees.

This syndrome is a congenital vascular malformation affecting the head, face, and brain. The primary process appears to be faulty development of the venous drainage for the cerebral capillary bed. A similar process affects the skin, eye, and the soft-tissues of the head. Development of the brain usually proceeds to a normal size, but after birth, there is progressive atrophy of the affected hemisphere(s). The disease is usually unilateral, but bilateral cases can occur. Typically the patient presents at birth with a "Port Wine Nevus" - a reddish-brown or pink discoloration of the face, often following the distribution of the trigeminal nerve.

Intracranially, ipsilateral to the facial nevus, there is abnormal circulation that leads to 1) cerebral dysfunction; 2) electrical instability (seizures); and 3) cerebral cortical atrophy. Seizures usually present within the first two years of life. Typically the occipital lobes are affected first, and most severely, but the disease may also involve the parietal and temporal lobes, and (rarely) the frontal lobe.

Patients with SWS typically suffer from an abnormal number and size of blood vessels throughout the brain. While some children with this syndrome can go on to lead normal lives, Declan had a very large number of abnormally large veins pervasive throughout his right cortex. Dr Tan informed us that we could expect potential learning and motor impairments, lifelong seizures, ophthalmic problems and the chance of mild mental retardation. If there ever was a difficult time to find and accept God's will - this certainly was it for me.

While very happy that the doctors had not seen any evidence of arterio-venous malformations (AVMs) that could have threatened Declan's life, the diagnosis certainly was much worse that either Michelle or I was expecting. After holding what we believed to be a perfectly normal baby in our arms for two days, being told that the same little baby would likely go through life with several significant problems is not something any parent welcomes. It was in fact extremely difficult to find any positive sense at this time, but that is exactly what Michelle and I tried to do after talking with Dr Tan. We did spend a few minutes in each other’s arms consoling each other, but we did realize that we would be parents to a very special son. Thanking God for sparing our son's life and for allowing us the opportunity to have such a special little boy, we knew that regardless of what happened as Declan grew, we were prepared to give him all the love and care that a child could receive.

Prayers for Declan Mark…

Cathy Kozachenko – Declan’s Godmother - visited him very early Thursday morning after waiting patiently for permission to visit him in the NICU. She lovingly sat with him in the early hours of the morning and anointed Declan with the oil from the vigil lamp of St. John Maximovitch before she had to leave for work. Declan’s Godfather, Tony Shah, was accompanied by his wife Mary and Declan’s two Godsisters Anna and Christina for both a visit and some special relief time for me and Michelle. The support that Michelle and I received during this week was nothing short of amazing. The close the day out, Fr John – our parish priest – also paid Declan a visit late Thursday evening and held a special prayer service for Declan in the presence of family and Ginger Fiock, one of the many wonderful NICU nurses that cared for Declan during our stay. Fr. John anointed Declan with myrrh from the miracle-working icon of St. Nicholas the Wonderworker before heading home.

Needless to say, many, many prayers from friends, family and strangers were offered for our little son that day, along with anointing with holy oil from St. John Maximovitch and myrrh from the icon of St. Nicholas. The support Michelle and I received from both family and friends was nothing short of amazing.

More Testing

Still wanting to ensure that a stroke or clot did not cause these neurological problems formed elsewhere in Declan's body, the doctors ordered a liver/spleen ultrasound. Declan handled all these with amazing strength for a three day old. Dad was there for all these tests while Mom was resting (after delivering and not getting any sleep from Monday through Wednesday, mom was MORE than exhausted!) But dad just couldn't leave little Declan's side -- from his first bath to his circumcision to all.

Wanting to further visualize the extent of SWS in little Declan, his team of doctors ordered five additional MRI scans - essentially a complete neurological study that encompassed five separate foci. The arteriogram and veinograms focused on the vasculature of the brain, while the set of gadolinium contrast studies visualized the blood flow (both direction and volume) throughout these vessels in the brain. These films would be taken Friday morning and would hopefully be reviewed and available later that day.

Dr. Koukkari strongly suggested that we consult with Dr. Jim Barkovich, a pediatric neuroradiologist at UCSF. My mother was a complete angel during this stressful time and volunteered to drive up to San Francisco with Ingrid Woodley to hand deliver the duplicate set of films to the right people. Not as easy as it might sound from the outset either, as it was obviously very important that we at least attempt to get Dr. Barkovich’s immediate attention to see if he could review the films before much more time elapsed. She not only found his office in the maze of buildings, but also walked it through two different offices to ensure that Dr. Barkovich would have them before the weekend. We could at least feel like we were making progress on something that was within our control.

Now the waiting…

It's Gone?! What do You Mean it’s Gone?

Have you ever felt like time just stands still sometimes? Well, time sure decided to all but come to a grinding halt for us Friday. These hours of waiting to hear something…anything taxed everybody that was praying for little Declan. Fortunately, our wait was not indefinite: late Friday evening we received word from Dr. Koukkari that contradicted everything we had been through the previous three days – "it" was gone!

That’s right - the series of scans taken Friday morning – the day after all those prayers were said for Declan and after he was annointed with holy oil of St. John Maximovitch and myrrh from St. Nicholas the Wonderworker – showed no signs of the physical birth defects that were seen in the scans and tests the earlier two days.

To try to make sense of this completely illogical and strange event, Dr. Koukkari had even placed a special call to Dr. Ed Barkovich to ask him to examine the films as soon as possible. He did not want to say anything else about the new films – positive or negative - until he heard back from Dr. Barkovich. Suffice to say though, things were positive enough to move Declan out of the higher-care area of the NICU into the lowest-care areas (one nurse handling four babies instead of one-to-one) for further observation.

Heading Home

Early Visit by Dr Koukkari

Michelle and I along with "Nana" Sullivan -- were at the hospital bright and early Saturday morning and it was not long before Dr. Koukkari paid us a special visit. After thoroughly reviewing the films that were taken only the day before and consulting with Dr. Barkovich over the phone, he confirmed for us that the new MRI films displayed no sign of the physical birth defect that he had been positively diagnosed with only days earlier.

After sharing this amazing news with us, Dr. Koukkari didn’t stop there – he said there was no reason we couldn’t go home today! He signed the orders around 9am that we could be discharged and was on his way. Elation! Overwhelming joy! I think that pretty much says it all.

Delayed Discharge

So there we were, sitting in the NICU Saturday morning. We had receive the best news we could have ever hoped for – our son was perfectly fine after a harrowing few days and we had a signed doctor order that paved the way to our discharge. But…where was a staff doctor in NICU to be found that could help us? Unfortunately, Saturday turned out to be a very busy day for the NICU and it was nearly 4pm by the time we finally walked out the front doors.

While we were more than a bit impatient at the thought of waiting hour after hour for the official signature that discharged us, the day turned out to be a great day with all the visitors that we had. George and Natalie Kalousek were the first to visit and it was great to see them. You can imagine their surprise when they heard we were leaving in only hours. Cathy and Nicholas Kozachenko came by as well with a beautiful plant and stuffed animal for Declan. Tony, Mary and the girls dropped by as well and were thrilled to hear that Declan really was heading home. Tony spent a bit of time with Declan before leaving. George and Ingrid Woodley also made it over before we were discharged.

Home at Last

And then we were on our way. Dr. Aldrete was finally able to come by and see us around 3pm and signed the discharge orders. We had all our belongings rounded up already and before the ink was even dry, we were walking out to our car. Joyce was sweet enough to videotape us pulling up – the first moments of our new family coming home. It was evident that Grandma Wirnowski had also been by, leaving a beautiful wall hanging announcing Declan’s birth!

Epilogue

Interestingly, when infants suffer strokes, the evidence of where the stroke occurred and how severe the stroke actually was becomes more visible over time – hence the reason for additional MRI tests four to six weeks after the initial incident. As one might have guessed, Declan was back in the hospital for this set of follow-up MRI scans five weeks after he was discharged, and while it was a bit surprising to some of the doctors, it was no surprise to us that all signs of cranial injury, stroke or SWS were nowhere to be seen.

Some doctors later tried to explain this event in a number of different ways – most explanations we heard contradicted statements that these doctors had made earlier. Some doctors and nurses had the courage and wisdom to see this event for just what it was…a miracle of God. And, if anyone remains unconvinced, please stop by – we have the MRI films that clearly show unmistakable and irrefutable evidence of SWS in our son’s brain one day and gone the next.

In fact, Declan was tested at Good Samaritan hospital for cognitive and motor abilities and development at six months of age using some of the most conservative testing methodologies available – and scored ahead of where he should be in motor development and right on target for cognitive development.

Questions…& Answers

So what do you do when “your” life is turned upside down, then right side up again after being dropped in such a situation? First off, I can say it was not “our” life, but one that God entrusted to us. It certainly was an interesting question that begged more questions: Why did this event happen the way it did? Why our son? Why us? What were we supposed to learn from it? Rest assured, these and many other questions came to mind during the first three days as well for many weeks afterwards.

I fully believe that this did happen for a reason and I hope to one day understand all the reasons that God allowed it to happen the way He did. After much contemplation though, I can say that a few things have settled in my heart:

1. This event provided us with but a small taste of the love that God has for all of us. The love that was felt for our newborn son and the emotions that poured through me during those first three days – as intense as it was and still is – cannot even compare to the love that God has for all of us – especially if He was able to allow His son to endure crucifixion and death for all mankind. No matter how much we love our children, God's love is infinitely stronger, deeper, perfect, and eternal.
2. I know that God continues to bestow and pour this incredible, unique love on us as we move into this new chapter of our lives – surely as a reminder of how we need to love our son
3. Never stop trusting or believing in God, especially in times when things don’t make sense and when there appears to be little hope.
4. God clearly reminded us for as long as we live, that this child is His, not ours. No matter how much we have come to love this child, how much we care for him, no matter how much of our own love, energy, patience, etc. we put into this child - it is ultimately still God’s child. He gave him life, He entrusted this life to us, He gave us the love, strength, patience, and endurance to bear the crosses that come with being parents - but at any moment He can take this life back to Himself. We, then, being God's babysitters, will answer to God at the Great Judgment concerning how we loved this child, how we cared for it, how we raised this child, what we taught this child. And this lesson shall inspire us to be better parents, and a better husband and wife team.

Glory be to God and His Saints!