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NAIT Survivor

Our son Roan was born with a rare blood condition called NAIT (Neonatal Allioimmune Thrombocytopenia) in Kingston, Ontario. He was in urgent need of a platelet transfusion which saved his life.


This is his/our story:


On March 29th, 2017, at 6:37pm, our son Roan Gordon Brown (aka RGB3) was born at Kingston General Hospital. He was two weeks early, born at 38 weeks and 1 day. He was a tiny baby weighing only 5 pounds and 5 ounces but otherwise appearing healthy.


Upon delivery it was noted that there was meconium present. He was placed on my chest, he cried and we were over joyed with the precious gift we had received. The evening nurse was coming on shift and started to tend to Roan and I. She noticed Roan's breathing was stressed. He was taken off my chest and a NICU team was called to check on him. The team arrived quickly and after some in room examination, they told us they needed to take him to the NICU and asked Rob to come with him. It was believed he had aspirated meconium into his lungs.


After I was showered and put in a wheelchair, they took me to the NICU to see him before taking me to my room. We were allowed to reach our hands in the incubator and touch him for a moment and then we were told he needed to rest.


Once settled in our room we were approached by three Doctors. They asked other family to leave the room so they could speak with us privately. We were advised that Roan only had 5 platelets left (he should have had between 150-400) and was in immediate need for a platelet transfusion. I will never forget the look on their faces.. they didn't want to be there talking to us.


Apparently once Roan arrived in the NICU and was being admitted, it was noticed that he was starting to develop petechia spots all over his tiny body and bruising that was getting more and more severe as the minutes passed. After an urgent blood sample being sent down to the lab, it was confirmed that he had severe thrombocytopenia.


We are very lucky to have one of the best hospitals in our area and they had the platelets he needed onsite. The transfusion was started within 30 minutes after we signed the papers. My husband wheeled me back down to the NICU so we could be there with him when they started the transfusion. We were no longer allowed to touch him. At this point, we were told that there was either a severe infection somewhere in his body causing this condition or it was NAIT.


The following day they took 9 tubes of blood from each myself and My husband and sent it away to a McMaster University where they do the testing for NAIT.


Roan's respiratory condition worsened overnight and he was put on the highest level of breathing assistance. The look on the nurses faces scared me. I felt they were sad. I didn't know how to ask the Dr.'s if our son was going to die. It felt wrong to even suggest that was a possibility. I finally mustered up the courage to ask but it came out as "would you say he is stable?" the answer was no. Those words sent a panic through my heart, my mind and my soul.


Every four hours they were testing his blood and every time the platelet count was either stabilizing or rising. This kept us going and gave us the strength to push through what felt like weeks. It was only hours.


Late at night on the 30th after staying all day by his side, the nurses allowed us to take Roan out of the incubator and hold him. Rob hadn't yet had that luxury and neither had Mattie. We each took a turn and then went home to get some rest.


The next morning when I arrived at the NICU was one of the best moments of my whole life. I walked in and his nurse said "he really came alive last night". Roan's respiratory distress had calmed down and he was taken to a lower level of assistance for breathing. He also started making his own blood platelets.


Over the next three days Roan thrived. He had a head ultrasound to check for inter cranial hemorrhage - a large risk with NAIT and it came back clear..also an amazing moment for us.


On May 29th, we received confirmation that this was in fact NAIT. The condition effects approximately 1/1000 of newborns although the paediatrician said that KGH has 2000 births per year and they definitely don't see two cases per year. In fact, in her entire career she has only seen 5 like Roan's.


There are so many things that fell into place and secured Roan's survival but the main reason was generosity. The generosity of a stranger. The selfless act of plasma donation by someone we don't even know saved our son's life.


Roan is thriving since receiving his second chance at life and we are forever great full for the people who donate blood, plasma and platelets.


The Brown Family