D.J. Svoboda

****For The Love Of Ian*** 

The Life of Ian Larsen Gromowski

Caution: The below pictures posted may be difficult to view, but that was Ian's reality due to his Hepatitis B vaccination and people need to see ALL of what Ian endured to grasp the pain he lived through.

Sunrise: June 25th 2007 Sunset: August 10th 2007

Day One-June 25th-    I was induced 2 ½ weeks early due to toxemia and preeclampsia. Ian’s due date was July 10th. Scott, my mom, and I went to St. Joseph’s Regional Medical Center at 5:00am on June 25th. Ian was born at 3:36pm, 8 pounds 1.5 ounces and 20 ½ inches. A BIG boy!

Wow, was that a day! My mom and Scott were my support for the day. Both of them were amazing!! After my water was broken (approx. 7:30am) the nurses indicated that there was meconium in the amniotic fluid. The concern for Ian was meconium aspiration (MAS) and therefore the Neonatal Intensive Care Unit (NICU) is notified and must be present at birth. MAS can happen before, during, or after labor and delivery when a newborn inhales (or aspirates) a mixture of meconium and amniotic fluid. Meconium is the baby's first feces, or poop, which is sticky, thick, and dark green and is typically passed in the womb during early pregnancy and again in the first few days after birth. The inhaled meconium can partially or completely block the baby's airways. Although air can flow past the meconium trapped in the baby's airways as the baby breathes in, the meconium becomes trapped in the airways when the baby breathes out. And so, the inhaled meconium irritates the baby's airways and makes it difficult to breathe. MAS is very common and at worst case scenario a baby stays in the NICU for maybe 2 to 3 weeks while the meconium clears from the lungs.

I received an epidural and everything was smooth sailing from there. Before we knew it, Ian was born COMPLETELY HEALTHY. Auntie Missy was the first visitor in the delivery room. He was weighed, washed up, wrapped and given to Scott and I. Then I was ready to be transferred to my room and Ian went with the nurses. When we got to our room I could immediately tell the nurses were concerned with Ian. They were there to give him a full bath and take his vitals. Soon the nurses mentioned Ian had a fever and he would be taken to the NICU for an assessment. OH NO! As a mom, I didn’t want my baby anywhere but with Scott and I. I was worried sick and Scott was there to comfort me. Several hours later a NICU MD came to our room and indicated that Ian in fact had MAS and was a bit tachypnic (rapid breathing) and had a fever. Again, this is VERY COMMON and we were told not to worry. I was told to get some rest and we could visit him first thing in the morning.

Day 2-June 26th-     Scott and I headed down to the NICU immediately. I was not happy when we arrived and Ian was in an incubator. I believe it is the worst nightmare of any parent to see their child in one of those things. We also watched as he was gavage feed, meaning a tube was inserted through his mouth and down his throat. The nurses would then be able to basically have the formula go directly into his stomach from the tube. I thought that was the worst thing Ian could ever go through, boy was I wrong. Scott and I stayed down there with Ian for the entire day. The doctor that was on (doctors at St. Joe’s rotate every 24 hours in the NICU) said they were confident Ian would be discharged from the NICU that day. Sure enough, Scott and I were in my room and Ian was rolled in! We were so excited. We had lots of visitors that day……but I could tell something was still not right with Ian. After everyone left, Scott and I sat in the room and we called the nurse. Mommy instinct told me that Ian was not ok. He seemed to be ‘wincing’ or ‘in pain’. Sure enough the nurse said he needed to be taken back to the NICU. Scott and I spent the evening in the NICU and then we couldn’t sleep so we were basically there throughout the late night/early morning.

Day 3 June 27th – Day 6 June 30th -     We followed much of the same routine for the next several days. On the third day St. Joe’s was kind enough to let me stay in my hospital room one extra day, although Scott and I spent every waking moment in the NICU. I was breastfeeding when Ian was able to and then when his breathing was not well we would gavage feed him or give him a bottle. On the fourth day I was discharged from my room, but we were able to stay in a family room down the hall from Ian in the NICU. We weren’t going home without our baby boy! There was not one moment I left his side unless I was eating or using the restroom. We read books to Ian, rocked him, changed his diapers, bathed him, and were there for every single feeding. In the wee hours of the night/morning the nurses would call us in our room and we would cruise down the hall in our pajamas to see our handsome boy and feed him. Visits by friends in the NICU were limited, but we did have a few more people visit him. Our parents were there every single day. Also during this time we were closing on our home. Our mortgage broker had someone come to the hospital so I could sign my rights over to Scott. Scott left and closed on our home by himself. On a day that was supposed to be so happy because we bought this house for Ian to grow up in and neither him or I were there. It was very sad, but Ian and I spent some quality mom/son time together while daddy was taking care of the house.

Scott and I hounded the doctors every day. We wanted as much information as possible. We asked more and more questions. We didn’t understand why Ian was still there.

Day 7 - July 1-     The day we were waiting for. The nurses at St. Joe’s indicated the doctors felt Ian was ok to go home the next day! Two things needed to be completed before he could be released. He needed to pass his hearing test and then receive his Hepatitis B shot. This is where I blame myself as a mother for not being completely educated on vaccinations. FACT: Infants are not required to get the Hepatitis B shot before they leave the hospital; it is suggested, but not required. FACT: You can work out a vaccination schedule with your pediatrician and develop your OWN guidelines with help from the doctor. FACT: You can order vaccinations directly from Central for Disease Control with less additives and single doses. FACT: My generation did not receive the Hep B shot at birth and we are all alive and fine. FACT: Infants immune systems are very weak when they are born and the Hep B shot can cause serious reactions if there system is already compromised, as was Ian’s. With this, Ian received his shot and by that evening his fatal allergic reaction began. Now if you ask the doctors at St. Joe’s, or any other doctor for that matter, they will tell you children cannot and do not have an allergic reaction to the Hep B shot. Well, my son is living proof that it CAN happen. Writing this story has been very difficult and some days I can only get a sentence in and I start crying and I say this because if I would have finished this story before January 15th this portion about the Hep B would not have been part of Ian’s life story. I would have said he was our “Medical Miracle” because we did not know this information. You ask ‘how is that possible?’ Larry, my father-in-law, said all along it was the Hep B shot. Scott and I kept telling the doctors at St. Joe’s that was it and no one listened to us. When we arrived at CHW every doctor kept telling us, “something insulted his system”, but no one could figure it out. Scott and I kept saying it was the Hep B and we were told it was not possible. You be the judge after you see the facts and pictures.

In October Scott and I asked Ian’s neonatologist from CHW to write the Federal Government and see if there were any similar cases to Ian’s. In January, much to the SHOCK and SURPRISE of Ian’s neonatologist and the entire Neonatology Board at CHW, the Center for Disease Control (CDC) sent a CD indicating there were several (hundreds) of reported cases EXACTLY like Ian’s. Infants that became fatally ill within 24 hours of receiving the Hep B shot and then passing away. These are just self-reported cases, what about those who have not reported their cases?

Day 8 – July 2nd-    FACT: This is what our son Ian looked like within 24 hours of receiving the Hep B shot…………………………

FACT: After receiving the Hepatitis B shot these symptoms also appeared:

Platelets dropped from 248,000 to 131,000

Rash appeared

Seizure-like posturing noted

Irritable, crying non-stop

Stopped eating

Viral-like symptoms

Day 9 July 3rd- Day 10 July 4th-    Ian became increasingly ill. His platelets continued to drop significantly. He wouldn’t eat (was previously breastfeeding), he was having trouble breathing, he was extremely irritable (basically wouldn’t stop crying), etc. Scott and I become very scared.

Day 11 July 5th-    A doctor at St. Joe’s (with NO bedside manner) told us that she ‘thought’ Ian had a virus and had a 50/50 chance of living. His platelets were at 7,000. Normal is 200,000-300,000. He had the chance of bleeding to death. He was moved to isolation.

Day 12 July 6th- Day 15 July 9th-    Ian stopped breathing repeatedly (I don’t think anything will ever be scarier than watching Ian just stop breathing, I was a nervous wreck), eventually his breathing crashed, and he was intubated. He became very edematous (filled with fluid). On July 8th I was able to hold Ian for a couple of minutes. Just to have him in my arms meant more to me than anything else ever has or will. He was baptized on July 9th and on this day Scott and I decided to have Ian transported to CHW. At this point, this was the hardest decision Scott and I ever made in our lives. They told us they were unsure that Ian would even survive the transport.

July 9th, Ian’s baptism:

Day 16 July 10th:-     Ian was successfully transported to CHW. I have to thank the transport team at CHW (they typically are the flight for life nurses/respiratory techs). That was the 2nd time I had been outside since Ian was born and walking to the ambulance I had never been so scared in my life. I prayed the whole ride to CHW and the song, “How to Save a Life” by The Fray was playing in the ambulance. That song will forever remind me of my son. Arriving at CHW was almost just as scary as the ride over. It was just like what you see in the movies/TV. Tons of doctors surrounded Ian, he was stuck with needle after needle, blood taken, bone marrow biopsy, poked and prodded. I cannot imagine how my son was feeling. He was such a good boy. Scott and I were devastated and exhausted.

Day 17 July 11th- Day 29 July 23rd -    Every single specialist at CHW saw Ian….Dermatology, Rheumatology, Nephrology, Immunology, Hematology, Infectious Diseases, and the list goes on and on. NO ONE could determine what was wrong with our son. No one would consider the Hep B explanation and even if they did Scott and I learned later that there is ‘no cure’ for something that MOST of the medical world does not believe possible. What we did know was that he received at least 4 blood transfusions (platelets) a day, his platelets remained low, he had rash after rash, he was allergic to some antibiotics and through it all he remained such a peaceful, strong boy. He made us proud to be his parents. Scott and I slept at CHW and never went home. We were fortunate that we had our great friends and wonderful family move us from our house in Milwaukee to our new home in Brookfield. I am forever indebted to all of you and you know who you are.

Day 30 July 24th-    Ian had surgery to have a tube inserted into his belly to start peritoneal dialysis. This would help extract some of the fluid Ian had built up. His kidneys had started to shut down and so this would help it along.

Day 31 July 25th – Day 36 July 30th-    After some time his kidneys started to work on their own! SUCCESS! But when all the fluid was out of his belly we realized his liver was quite swollen, you could physically see it protruding from his belly. Although his liver was partially damaged it also started to ‘heal itself’. Ian was looking better slowly, day by day. He started to open his eyes and move around a lot more! At this point Scott and I went home for the first time at night to sleep. I cried the whole way home because it was the first time in Ian’s life that I was spending the night away from him.

Day 37 July 31st-    This was the last time I was able to hold Ian. I held him for 2 hours and he fell asleep in my arms. Most mothers take this gesture for granted; I will hold this ONE memory in my heart forever. My son looked me in the eyes and fell asleep in the comfort and warmth of my arms. Nothing could ever replace that feeling.

I love you more than the world Ian...

I wish we could have done this forever……

Day 38 August 1st- Day 46 9th-    August did not prove to be such a kind month to Ian. Right after these pictures were taken Ian took a turn for the worse. He was accidentally given the antibiotics he was allergic to and then he progressively got sicker. He was transferred into isolation because his white blood cells were near nothing and that means he was at a severely high risk of getting an infection with nothing to fight it off. Also, on August 6th my grandmother passed away in Colorado. Although she argued, I MADE my mom go to Colorado to be with her brothers/sisters and be at her mother’s funeral, which she ended up missing because she took the first flight home when hearing of Ian’s condition. This was an extremely difficult time for our family.

We had a meeting, a Care Conference, on August 9th with all of Ian’s physicians and they told us that after his 3rd bone marrow biopsy they found that Ian was not producing any platelets, white blood cells, or red blood cells in his blood. So their analogy was “The typical person’s blood can be compared to Lambeau field during a Packer game. If you stand in the middle you see a sea of yellow, green, and white colors from the fans (representing platelets and red and white blood cells). Ian’s Lambeau field had no fans.” We decided to put him on the bone marrow transplant list with hopes of him being able to get a match ASAP. But that was not meant to be. After we left the meeting we found out that Ian’s saturation rates for his breathing were at 60% and they should be at 100%. Ian’s little body was giving up on him. He just couldn’t hang on anymore. Our little fighter had fought his last fight.

Day 47 August 10th approx. 1:00am-    Ian Larsen Gromowski went to heaven to meet his Grandpa Ken.

There are no words that Scott and I can express as to how we felt then, feel now, or will feel for the rest of our lives. We had a son who died at 47 days old and who suffered tremendously. To say we miss and love him beyond belief does not even begin to do our feelings justice. Life has changed greatly for us and we are changed people. No one, no child, will ever replace our precious lil’ sunshine Ian.

Please check out the following websites:

www.thinktwice.com – Thinktwice Global Vaccine Institute (provides information you are not likely to get through mainstream sources).

http://www.cdc.gov/vaccinesafety/ - Center for Disease Control (government program)

www.fda.gov/cber/vaers/vaers.htm - Vaccine Adverse Events Reporting System (VAERS). Provides info about VAERS, how to report them, the Table of Reportable Events, the Vaccine Injury Table, and other relevant material.

www.gval.com/index.html - Global Vaccine Awareness League

www.vaccinesafety.edu – John Hopkins School of Health

www.immunizationinfo.org – National Network for Immunization Information

www.909shot.com – National Vaccine Information Center

They will give you some insight and education on vaccinations. LET ME STRESS, Scott and I are not against vaccinations, but we definitely believe everyone should know the risks/advantages to them. Educate yourselves. Adverse reactions are not as rare as we think. Although many health professionals say, “it is a small statistical percentage of the population that suffers from adverse reactions to vaccinations”…….BUT if it is YOUR CHILD the statistic is 100%!

We have to thank Ian’s special doctor at CHW because without her we would not have received ‘confirmation’ on the Hep B. She is working with us to find out more information and wants to write a case study on Ian’s life, but we need ‘medical proof’ to do so. So, we are still running tests from Ian’s tissue samples. She supports us.

Also, all of Ian’s nurses, nurse practitioners, doctors, respiratory techs, OTs, PTs, and staff at St. Joe’s and CHW were amazing people. I give you credit for what you do each day. Your career is a special one. We cannot thank you enough for everything you did, day in and day out.

To the Manager of the NICU, as parents and as friends, we deeply thank you for your kindness and always checking in on our needs.

Finally to our family and friends, everything you did meant the world to us. To our immediate family who was there EVERY single day, for every tear and sign of hope. To our friends, thank you for all of the kind words, gestures, gifts, support, MOVING assistance, and love.

Words do not do our gratitude and thankfulness any justice. But know you have an angel in heaven watching over you for all the kindness you bestowed on our family.

         Ian At Birth                    Ian Within Hours of Hep B Vaccine         Ian Within A Few Days

Mommy to Ian, Deanna Gromowski:

Visit  www.iansvoice.org , to read more...