The Kawasaki Disease Forum

21 January to 05 February 2010 has been the hardest battle I have ever faced on my entire life. It is a battle that you would do everything to win. Nothing can ever explain how difficult it is to lose a child. The pain is so unbearable.

My daughter Maxene Josef Sali Gelacio or “Max” was diagnosed with KAWASAKI disease. (http://en.wikipedia.org/wiki/Kawasaki_disease) It’s a rare disease where its cause is still unknown. Here in the Philippines, the doctors said, the youngest Kawasaki patient they had was a 2mos old baby. For the record, Maxene was now the youngest. She was only 2weeks old when she was diagnosed.

Jan 21-22: She got a fever of 39.1. We were at the province then having a week vacation. We rushed her to the nearest ER and had her confined. She needs to be tested on CBC (for the cell counts), CRP (to check inflammations) and Blood C/S (to see if a bacteria will grow on the blood extracted from her). Results are all normal.

23 Jan – We transferred her to Cardinal Santos Hospital in Manila to continue the lab tests. This time, she had rash all over her body including her face. Fever is high. Extractions of blood through central and pricking were done to her. Since she was so young, good veins to give enough blood for tests were hard to find. I was not allowed inside the treatment room where all extractions needs to be done but I insisted that I should be there. I will never leave her side. I was counting all the injections she had. That was the start of her pains.

Jan 24-29: Was a long process of finding out where the fever is coming from. All her lab results were normal at first, until one by one, results have become upsetting. Her WBC and CRP counts are both extremely high. WBC normal count is 6, hers was 31. CRP normal count is 0.8, hers was 25.6. Max is obviously fighting an infection. She was also high reactive on antibiotics that’s why she needs to be followed through with Benadryl to control her allergy. 3 front liner antibiotics were initially given to her to fight the infection but her body resisted it. We then have to give her the next level of antibio. 2 more kinds of antibio were given but resistance persists. Four doctors are looking after her (PEDIA, INFECTIOUS DISEASE SPECIALIST, ALLERGOLOGIST, and PEDIA CARDIOLOGIST). We have become impatient of the cause of the fever. The specialist on Infection was then looking at Kawasaki Disease (KD) as the main cause because of the unexplained fever and the symptoms that Maxene started showing (Fever of more than 5 days, resistance to antibiotics, rashes all over, reddening of the eyes, cracking and bleeding of lips). She then needs to undergo 2D echo to see the status of her arteries. It’s because KD attacks the coronary arteries that will result to aneurysm if left untreated. The result was normal at first. But the repeat 2D echo showed significant increase on the size of her right artery. From 1.0 normal size, it increased to 2.76 in a matter of 5 days. The diagnose was then confirmed. My Maxene have Kawasaki.

30 Jan – we started the KD treatment through IVIG. The amount of drug to be given will depend on the weight of the patient. The heavier you are, the more vials/btl you will need. Max needs 3 vials which costs 10K each. The administration of the drug will take 12 hours. There are adverse effects that needs to be monitored on the duration of taking the drug (severe headache, vomiting, high fever, reddening of the whole body, difficulty breathing). If the effects are no longer tolerable on the patient, administration of the drug needs to be slowed down or stopped. My baby obviously can’t tell if she’s hurting, she must then be closely monitored for anything unusual on her behavior and/or appearance. Treatment started at 6PM and ended 6AM. I stayed awake.

01 Feb – It was successful. Rash and fever are gone. She was blooming! It was a wonder drug. We were then cleared to be discharged from the hospital. She only needs to take Aspirin orally from home for 4 weeks then a repeat 2D echo to check the size of the artery if it normalized already. We were so happy to bring her home. She was Fever free for the whole day.

02 Feb – 3:18 AM, fever was back. I was alarmed as I remember what the doctor said. There are cases where the first IVIG treatment will not be successful and you need to have a repeat treatment. If the second treatment is still unsuccessful, third would then have to be steroids. Her fever was not going down, I texted the doctors already. I was asked to have a repeat CBC and CRP tests. If counts are still high and fever continues, the 2nd treatment should be done. Sadly, counts are still high and fever stayed.

03 Feb - we were back at the hospital for the 2nd treatment. I breastfed her and let her fall asleep while the drug was being administered. We were halfway through when she suddenly opened her eyes, flared her nose, and gave an odd sound coming out from her mouth. She’s finding it hard to breathe. IVIG was stopped immediately and all I can remember was our Room 230 was filled with Doctors and Nurses. Medical equipment are everywhere. The doctors tried everything to give her oxygen, I even tried to breastfeed her to see if she will suck, but she just can’t open her mouth. To tube her was the only option left. She needs to be transferred to ICU immediately.

04 Feb – Intensive Care Unit. A place where I never dreamt my baby will ever be at on her 1st month birthday but I had no choice. I stayed positive that things will get better. But when I asked her doctor “Pls be perfectly honest with me Doc, are we going to lose her?" she just answered “She is monitored and guarded here at ICU” I knew then something is really bad but I declined the feeling.

Still at ICU, she got really anemic. If normal is 21.00, she was only 06.00. Blood transfusion is needed. She also needs Frozen plasma transfusion to restore the so called vein where all fluids should pass through. Hers was leaking already which explains why she was bloated. She can’t urinate on her own, a catheter was inserted on her. All these breaks my heart seeing all tubes on her, but if it will make her live then I have to suppressed the feeling.

05 Feb – ICU around 9AM, I whispered to my daughter while she was at bed. When I called her name, she opened her eyes and slowly moving them left and right. I said to her,

“Max, mommy’s here and I will stay here beside you. Let’s fight this disease ok? We will never give up. You are not going to leave me. We will fight this together and we will go home together. Daddy’s on his way here now and Ate’s waiting for you at home. We are doing everything to help you. I love you so much baby, Mommy loves you so much. Please stay with me. Promise me you will stay with mommy”

Around 1PM, her heart rate dropped to 70. Doctors are around her again. I couldn’t get near her. Whenever there’s a chance that a Doctor will leave her to get some medical tools, I take my chances to hold her hand and feet which are starting to get cold. When her heart dropped 40, I kept on calling her name. Whenever she hears my voice, her heart rate will increase to 50 then 60 but goes down again to 50, 40. And when she heard me saying “max, please stay with mommy”, her heart rate goes up again. The Doctor said “Mommy, she's finding it hard to hold on, she is only fighting for you”. I said no, I told the Doctor that we can still do something about it. Keep on reviving. I am not giving her up.

Letting your child go at that very moment was so hard for a mother. But when I looked at her arms which are all white and I can only see black marks of all the extractions and injections given to her, which I stopped at 30 and lost count already. Not to mention all the drugs she took. Should I still hold her back? Or should I let her go to a place where there will be no more pains? I finally said..

“Ok baby, you can go. You can leave mommy now. I’m sorry for all the pains just to stay with me, we tried to let it go away sweetheart but we just can’t. I love you and mommy will miss you so much. You can go my baby”.

That was the only time her heart stopped. I glanced at the heart rate monitoring and saw it turned “0”. My Maxene left us at 1:40PM. My world crashed and it seems that my heart stopped beating with her.

Cause of her death was Multiple Organ Failure, Acute respiratory distress syndrome, Severe Anaphylactic shock, Ventricular Tachycardia, Congestive heart failure, Pneumonia, Kawasaki Disease, IVIG resistant.

When the doctors finally removed all tubes and IV’s on her, clothed her with blanket and gave her to me, I finally got a chance to carry and fully embrace her. Only this time she was no longer breathing. That moment was so painful. What could be more painful than embracing the dead body of your child? I was still carrying her like she was alive, I was rocking her and kissing her, but she can no longer open her eyes and cry. The pain is so intense. Who would have thought I will bear a child and lose it in a month?

We had her cremated on the same night.

Now I am faced with the reality that I lost her. I am thankful that I was surrounded with family and friends on the first 3 days at Mt. Carmel for the wake of her cremains. But pain hits really hard before I go to sleep and the moment I wake up in the morning. Going home is so excruciating, her crib is still in place, a pack of nappy left open, paracetamol for her fever is still inside the ref, baby clothes still hanged. This morning, I finally got the courage to unpack her stuff from the Hospital. I so miss her scent while I was folding her baby clothes/socks/mittens. I miss the warmth of her skin and mouth whenever I feed her, her soft cheeks that I am so fond rubbing using my nose, her fragile body when I carry her, even her cries! I so miss everything about my Maxene. The longing is so unbearable. It hurts so much that I can’t have her back.

On one of her mass, I asked the priest to have his mass and homily intended for Maxene. The priest said, you have an angel already, and we don’t pray FOR Angels, we pray TO them. You took care of her when she was still alive, now she will take care of you from up there. That’s why when I am in so much pain, I pray to max to take it away. I feel sorry that I made her suffer when she was still with me, I am her mommy, I was supposed to give her only comfort. If letting her go will hurt so much to me but will finally give her the comfort and peace that she deserves, then thy will be done. In heaven there will be no more injections and IV’s and treatments. Only happiness.

Thank you to all those who have extended their condolences to our family. People like you strengthens us more to surpass this trying moment. We know the pain will stay for now and will strike hard from time to time. I know that we just have to embrace the feeling as we can’t short-circuit the grieving. We just have to trust on God’s greater plan.

Please be aware of KAWASAKI, the disease is rare and the specific cause is still unknown, so its best to be aware of the symptoms. My heart goes to all mothers who also lost their kids while battling KD. Visit this site http://en.wikipedia.org/wiki/Kawasaki_disease.

I can not express the words of how really sorry I am. We are not just flesh but spirit too. Her holding on because you kept calling to her is proof of her spirit. You will see her again, but for now in this life and world, I am so sorry for your broken heart.

thank you. Everyday is a struggle for me to get by. I know that my husband and my eldest needs me, thats why when I am consumed with so much grief, I pray hard to get me going.

I'm so very sorry for your loss. My son had KD two years ago (he was 10 yrs old), but the treatment worked well for him and he appears to have fully recovered without (thank God) any side effects. But I remember quite well how sick he was, and what a terrifying experience it was for all of us. Our thoughts and prayers are with you. We are quick to volunteer for any research studies about Kawasaki Disease, because our hope is:
-that someday very soon the cause of KD can be found
-diagnosing KD will be easier, with more accurate testing, and with more people trained to recognize the symptoms
-that all of these things will lead to fewer KD fatalities and long-term complications

God bless you, you and your family will be in my thoughts & prayers.

What a heart breaking KD story! I am so sorry for your loss! She looked like such a beautiful baby. My thoughts and prayers are with you and your family. May your baby life in your heart forever!!!
Beth

Hi Beth. Yes, those were also my hopes. I look forward to the day that all three that you mentioned will materialize soon. It would be a tremendous help to those kids with KD. Seeing my very young baby undergo those series of tests is still a nightmare to me. I posted her story to my facebook, friendster, and all other means so that people here in the Philippines will be made aware of KD. I wanted her loss to somehow help other people who are on a similar situation. I am also helping myself recover but the longing will always be there. It is not easy and i know it will be a long lonely journey but I am taking it one step at a time. Thank you for your kind words.

No words can express how sorry I am for your loss. Thank you for sharing your story. We'll keep you and your family in our prayers.

Thank you Joe, I am keeping the faith alive in my heart to surpass this trying moment.

Heartfelt condolences on your tremendous loss. What a beautiful baby girl, now your angel. May God comfort you and give you and your whole family strength.

Hi trevsmom, thank you. Yes she is indeed beautiful. She was just like sleeping when she left. My faith in God keeps me going. He knows that I cant be strong all the time thats why I am casting my burdens upon Him. My heart is still bleeding with so much longing but I know that God will heal my wounds in His time. Im also confident that my Angel Max is looking after me.

WOW, I am so sorry for your loss. I cried as I read your story and I am sure it is nothing compared to the pain that you felt when you kissed her and she did not hug back or move in response to your touch. KD is something horrible and I wonder if it was even harder on her because she was female. Becausee you rarely hear of females getting it. This is so sad. My prayers go out to you.

You and your family are in my thoughts and prayers. How difficult a journey this has been for you all...I just cannot imagine. Holding you closely.

im so sorry to hear that you lost your beautiful little girl. i had KD and pnemonia as well when i was about 6, i survived.
one of my goals in life is to raise more awarness of KD as many people have not heard of it.
best wishes to te future

Carrie x

You gave us a beautiful story of love between a mother and baby daughter with your words. I am so saddened to hear of the loss of your daughter....and also am so sorry for the pain you are experiencing. Sometimes it is very hard to understand or to know what God has planned, but it sounds like you have great faith that He is in control. Your beautiful words to your child prove how much you love her and I firmly believe you will see her again. For the short time she had here, you can be so thankful (and she also) that God allowed you to be her mommy and she your child. In time you will be able to help others in need that are suffering, in ways you only know how to understand. The grief will linger, but God can use it to help shape who you are and you will be able to use it to help others. Again, I am so very sorry for the loss of your daughter to KD. None of us can imagine the healing process that your are enduring......we are all waiting for an answer of the cause of this mysterious, horrible illness.
Prayers,
Sandy

we didnt stop crying the moment we read the full text,..wer so afraid to experience what u have been to..,because my cousin was rush now to philippine heart center prayer is all we need,.