Mikko Rials: Funds for Short Gut Guy
$1,515 Raised
30% of $5k goal
30 contributors
4 Years running
Mikko has had more hospitalizations/surgeries than I can remember in the last 3.5 years. Dealing with his daily challenges (incl. multiple medications/digestive struggles) is quite the undertaking, physically, emotionally, and financially. More ...

Mikko was born with gastroschisis, a birth defect that only occurs in about 1 of every 5,000 births, and it was detected through a level-2 ultrasound that his small intestine was protruding through a hole in his abdomen. We already had one child who needed surgeries within the first year of birth (our other son, Sage, was born with a cleft lip and palate), and this was an even more daunting worry. Mikko was born nearly two months early on New Year's Eve--he never required respiratory assistance, and his weight (5 pounds 1 ounce) was impressive for both his gestational age and his condition. However, when he was born, the surgeon was concerned about the condition of a large portion of the intestine; much of it had not received proper blood flow and had been damaged by exposure to the amniotic fluid, rendering many parts basically "dead." He had a minor surgery when he was a few hours old to increase the size of the hole in his abdomen, since it had been constricting the intestine, and to place a silo in which the tissue would be protected until it was time to put it back in his belly and close the hole.

During this time we couldn't hold him--we could only place a palm gently on his head through the side of the isolette, wondering when we would hold him and feed him, things most parents expect and think nothing of when their babies are born! The doctors waited a few days to see how everything looked after the swelling went down, then proceeded to operate, lifting out and measuring the intestine to determine how much he had and how much was damaged to the point of needing to be removed. The night before the surgery, I went up to see him in the NICU and finally asked the unthinkable, but only able to choke out the words "So, depending on how much of the intestine is bad, he might not make it?" And saw the small confirmatory nod of the kind doctor that was in the room. And I just cried on her for an hour, so fearful of what news I would receive when the surgery was finally over.

The next day, after waiting feverish hours,the surgeon told me that the surgery was successful in many ways. However, a typical full-term baby has about 180cm of intestine; Mikko had about 85cm total, and 15cm were too damaged and had to be resected. Other portions that were partially dead had been repaired. But all was not over. In all, Mikko has had four abdominal surgeries, because additional resections were needed.

At one point it was discovered that some portions of the intestine were not even hollow and did not allow anything to be processed through them. This was only discovered later as he was able to start eating (which happened at about 2.5 months old (he had never eaten anything before that--nutrition was provided through TPN (basically raw nutrients) pumped into his blood through a central line)). He had only been eating for about four days when it was discovered that he had a yeast infection in his central line, which was particularly worrisome, as a yeast infection in the bloodstream can be fatal. Eventually he was able to begin eating again after recovering from the yeast infection, but he didn't tolerate it well and soon began feeding through a gastrointestinal tube directly into his stomach. That was the status quo until a few weeks after he finally came home on May 15th, four-and-a-half months after he was born. Once he was home for two weeks, doctors encouraged us to begin feedings by mouth, and he has been doing pretty well with that.

Mikko has had his central line removed, so he no longer gets IV nutrition, which is a huge victory, but he has had some intestinal bleeding lately, which may require more surgery.  Even when he's healthy, we travel to Boston monthly for labs and a clinic visit.  So far, his care has totaled well over three quarters of a million dollars, and his current medical needs just add to this total; he takes 7 medications every day.  Although we have private insurance, it doesn't come close to covering all these expenses, and his condition requires me to be home with him to offer the care he needs. Your contribution would bless and help us so much! We thank you from the bottom of our hearts!

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