The fight for Idan
July 1, 2013 | Jewish Tribune
Hi, my name is Yael and my husband is Ron Goldshmid. We are the luckiest people on Earth.
After two years of miscarriages and fertility treatment, we finally got pregnant with our miracle baby boy and named him Ariel Idan!
Ariel was a fighter from when he was just 6 hours old. He was born with pneumothorax (a hole in his lungs) and spent his first week of life in Mount Sinai’s NICU where he required a breathing tube. The doctors were shocked to see our little trooper strong and brave enough to pull the tube from his nostrils, but we weren’t. We knew exactly who Ariel is, and what he was capable of.
The real problems started when Ariel was only 5 weeks old. Ariel developed a high fever and we rushed him to The Hospital for Sick Children “Sick Kids”. The doctors were puzzled and started mentioning diseases that we didn’t know or didn’t even want to hear about, like CMV, MONO or even cancer.
Then all of a sudden, just like that, with no treatment, Ariel got better! We were sent home and Ariel continued to thrive for the next 15 months while he continued to be followed by the Hematology department at Sick Kids. We were all super happy with his progress.
This was once again a sign that our Miracle baby boy Ariel is truly a miracle!
Shortly after Ariel was 17 months he developed a fever once again that wouldn’t go away. Ariel felt and looked very sick. This is when we knew something was wrong. Once again Ariel was rushed to “Sick Kids” where he was admitted on the spot.
When we arrived at the ER, Ariel was extremely lethargic, no energy to sit, eat or drink. He had a fever of 40.1 C. When his bloodwork came back it felt like déjà vu. We knew immediately that whatever Ariel had a year ago came back with a vengeance.
The next few days Ariel was put in isolation, IV put in, was poked for blood twice a day, was put under ice packs to reduce his fever, had a bone marrow aspirate, and a lumber puncture. He was beyond miserable and the only thing that kept him going was his ‘oko' (chocolate milk) and 'hamburgee' (hamburgers).
On March 14, 2013, Ariel was diagnosed with HLH (Hemophagocytic Lymphohistiocytosis). HLH is a rare disorder of the immune system. HLH is fatal if not treated within the first 2 months of diagnosis. The only way to cure HLH is with a bone marrow transplant.
Doctors came to discuss the disorder with us, and although we heard them, it wasn’t registering. Surely they weren’t talking about our little miracle boy, right? Our little angel, sitting there smiling at us while they are telling us he has a life threatening blood disorder; what does that even mean? What is HLH? So many questions, not enough answers. They don’t even know, they are still studying and studying HLH.
That night Ariel started treatment (steroids). Overnight he seemed to be doing so much better, fever was gone; counts were going up…can it be? Has our miracle baby boy done it again? Doctors were shocked once again, but we weren’t, we knew!!
After two weeks of living at “Sick Kids” and getting intensive treatment we were sent home with a big smile on everyone’s faces - ours, the doctors, and the biggest smile was on Ariel.
Unfortunately it was just a brief celebration…Ariel developed major side effects from the high dose of steroids and was admitted to "Sick Kids” once again. While on steroids, Ariel gained 6 kg (13 lbs) in 2 weeks, developed high blood pressure, diabetes, joint pain and was unable to walk/move due to the weight and bloat. The doctors lowered the dosage and he started to get back to normal.
We were happy to see the steroids being reduced and our little miracle child returning to his true self and back home. But our celebration was cut short once again. Ariel developed another fever and was admitted again without hesitation. The verdict was clear – the HLH returned for the third time and Ariel is now in desperate need of a bone marrow transplant, ASAP.
During the time that Ariel was thriving and doctors had no concerns, we were busy creating another angel which is now growing slowly in mommy’s belly. Mommy was 20 weeks pregnant when Ariel was diagnosed with HLH. Although we are all very excited about our new addition to the family, we are very scared and hopeful. The baby’s cord blood may be able to save Ariel's life, which is exciting, but there is a 25% chance that the baby has HLH as well, which is the scary part.
Ariel’s journey is only starting now, even though he has been fighting for the majority of his life. The journey is for Ariel’s “life”. It is the most heartbreaking thing to see your child suffering when you know he is so innocent, you just want to make the pain go away from him and plant it in yourself.
Ariel is an amazing, brave, and tough little boy. His smile is what keeps us going.
Ariel is our miracle baby and will continue to be for the rest of our lives.
For more information visit www.fightforidan.com