And so it begins…

 

 

 

 

Corrigan Owen Andrew was born on may 28, 2008 after a healthy pregnancy and scheduled c-section. Weighing in at 8lbs 4.4 oz he appeared normal and healthy.  On day two of life he began to vomit after every feeding and became lethargic and cranky when awake. After a rough evening of several vomiting episodes he was taken to the nursery for closer observation. It was there, under the keen watch of the attending physician and nurses that they thought that they notice "seizure-like" activity.  After a few more days they decided to transport him, by ambulance, to a better equipped NICU.

 

EEG

While at WVU's Ruby Memorial hospital he became sicker and sicker. Doctors were stumped as to what was behind his symptoms and told us, after several days, that they would have to "wait and see what Corrigan tells us is wrong" 

One morning Mark's boss called to let him know that he had something to tell us.  He said that the previous evening he tried to lay down for the night when he heard God tell him to go downstairs and log online. He said that he told God that he was tired and that he wanted to sleep but God pushed him to move. After logging online and with limited information about Corrigan's symptoms he did a Google search and told us that we needed to tell the doctors about UCD.

 I know how much doctors love (sarcasm alert) when you tell them how youve solved the medical mystery by Googling it ( Jinky's mister! ) and was hesitant to speak up, Thankfully, Mark had no hesitation. That morning he told the doctors, during rounds, what his boss had told him to share. The lead physician scoffed and said "in thirty years that I have been here I have seen two cases of a Cycle Disorder and if that were the case Corrigan's ammonia levels would be in the thousands!"  We then shrugged it off believing that we had done our best to pass on the info and that the doctors knew best.

 

The next day, as we arrived in the parking lot of the hospital, we got a call to hurry upstairs. As we arrived at the NICU the doctor met us in the hall and said " What does your boss do for a living?"  Mark replied that they worked in freight and the doctor said " He is a genius…UCD is exactly what Corrigan has and we have to move quickly"  Little C was flown by lifeflight to John's Hopkins University that very afternoon.

 

Things got very serious very quickly. At JHU he was intubated and sedated. He went through a risky two-day dialysis to attempt to remove the toxic ammonia from his little body.  The risks were great that he could bleed out from the catheter procedure that went directly to his heart and also that he might never awaken due to the toxicity to the brain that ammonia causes.  Thankfully, the dialysis worked, the medicines quickly kept his levels down and he was slowly brought out of sedation.  

The next step was to simply wait and see how much he would awaken on his own.

 To our tremendous relief he slowly regained full consciousness and opened his eyes.  He spent several more days coming out of his fog..partly due to high amounts of pheno-barb in his system and partly due to the stress of the previous week. 

 

On day 19 Daddy celebrated Father's Day with a very alert little baby C and a heart that missed his favorite guy "over three feet tall"…Big C.  Father's Day was also very good because they removed his NG tube and Little C took all of his feeds by bottle.  Cor is growing rapidly exceeding the weight gain expectations of his metabolic nutritionist and he also did a little show-off for his Occupational Therapist by consuming a large bottle of formula in 6 minutes with no coughing, gagging or vomiting (and also managed THREE burps for her as well…showboater!)

 

This is only the beginning of our journey with UCD and from the little bit of reading I have allowed myself to do about this disorder I know that it is going to be tough.  Ive read scary things that state that ALL children with ammonia levels as high as Cor's were had "severe cognitive impairment" Not just some…EVERY. SINGLE. ONE. and while frightening and unknown it is nothing I can change. It is what it is and we will deal with it when it arises. No matter his impairment..no matter the challenges…this child is a miracle to us.  He has brought so many people together, he has shown that when things get really tough people come through, and he has taught me the meaning of Faith.   My little man is a fighter and I'm incredibly thankful for each and every day that God allows him to stay with us. 

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10 thoughts on “And so it begins…

  1. What a tough little guy you have. Thanks for sharing your lives. I cried when I read this because I went through a tough diagnosis after having my otherwise healthy baby in the NICU for a few days. Is UCD on the newborn screening tests?

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    • Nancy, it is now on the expanded newborn screenings in almost (?) all States! The problem is that symptoms often appear before the screening results come back so raising awareness of confusing, and sometimes subtle signs and symptoms, among pediatricians and new parents is VERY important! Corrigan was showing signs (we were unaware) on day two of life and was in bad shape by day 3.5. I never did hear anything from Newborn screening about Corrigan. Thank you for stopping by and leaving a comment Nancy, Corrigan is a tough little guy and makes me very proud.

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  2. I figured newborn screening might take too long. 😦 Maggie’s screening came back immediately – when she was 2 days old – and the doctor called us with the diagnosis four days later. We were really blessed with that. But in other cases of some families I know, it’s taken up to 3 months for the test results to come back, which in my opinion is a tragedy. During that time children are suffering and it isn’t right.

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  3. Hi Mindy

    After reading your story i am into tears as my boy suffered from same pain.
    God bless our kids and i believe they are little heroes. They are so brave. And offcourse we are proud parents 😊

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    • Sapna, thank you for reading and commenting! I can be reached at mindy.mooney@gmail.com Feel free to email at any time, I also left you some information on one of your other comments. There are more than 2000 families in the US living with Urea Cycle Disorders and many are online- Facebook, blogs, message boards etc. Many are more than willing to talk with you or any other UCD family member! remember, this disorder may be rare, but you are not alone!

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