Panhypopituitarism. Multi-syllabic words aren’t always fun.

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This is Little Man.

It has taken me a long time to be able to write this story, so bear with me….

My little boy is my youngest and my last baby. He is a lucky boy because in addition to having me for a Momma <giggle>, he has three big sisters that keep him well mothered at all times.

Little man has a big heart, and huge smile, and an awesome little personality. He’s funny and sweet and a big troublemaker.

I call him many things, Little Man, Tubby, Bubba, Trouble, and Superman.

Most of those names are pretty usual I suppose, Little Man, because he’s a “he”; Tubby because, well, he’s tubby. I call him Bubba sometimes because he has the three big sisters, and Superman because he is Superman.

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We adore our little girls, but we knew our family wasn’t complete without a rough and tumble, mud-covered, mess-machine of a little boy. We waited with bated breath through the first 16 weeks of my pregnancy for the ultrasound that would tell us the gender of our fourth and final baby. When the Dr. said he saw a little BOY, our joy was immense.

We planned his room, purchased our first baby boy layette, we decorated in blues and browns and zoo animals… our world was perfect. My due date came and went in late October of 2011 with zero activity, then Finally, Halloween morning, contractions started. He was 10 days late, but he was finally on his way.

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As soon as he was born, the Dr’s knew something was wrong. He seemed ok, but his blood sugar was dangerously low and he wasn’t bouncing and lively like he should have been. He was taken to the NICU to “perk up” for what they assured me would be no more than 12 hours. Unfortunately, he couldn’t stabilize his blood sugars so they took some blood for labs. His liver numbers came back all wrong which was strange. The NICU Dr called for an endocrinology consult, got an MRI of he brain and waited for the “gland specialist” to evaluate him.

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That never happened because before they could get the specialist in to see my baby boy, he crashed.

They transferred him to a larger hospital in the Seattle area for an emergency surgery, his bowels were inexplicably dying. They call it Necrotizing Enterocolitis. That long unpronounceable diagnosis translates roughly to: an infection causing death of tissue in the small and large bowel. This is something that usually only happens to preemies. Babies born too early can have underdeveloped bowels that just aren’t ready to work yet. My son was 10 days late, so this made no sense. How could this be?

After the surgery, they said to prepare ourselves because our son was in big trouble. There was nothing they could do besides relieve the pressure and pump him full of antibiotics. They said he likely would not see the next day.

To say we were devastated or crushed or pulverized would not adequately describe the way it feels to have someone tell you that your child is going to die and that there is nothing anyone can do to stop it. There are no words for that. When people say to me that they can’t imagine how it would feel, I say, “Don’t try. You don’t want to know.”

We stayed by his tiny hospital bed in the NICU of that big hospital all night. At about 4 in the morning, I had been awake for so long that I couldn’t see straight so they led us to a temporary parent room and practically ordered us to rest, if only for a little while. I slept for a couple of hours and dreamed things I won’t torture you with… Even now, almost 2 years later, with my (now very big) baby boy at home, those dreams are still too sad.

After 2 hours or restless, tortured sleep we went back to the NICU to find our son much unchanged. We were so afraid to leave him and so relieved to find he was still there when we returned. It had been more than 12 hours since the surgery, and he still lived.

After 24 hours of watching, the Dr came back and asked for permission to go back into surgery and see if there was any improvement. He should not still be alive, they said. He could have made a small improvement but Don’t get your hopes up. If there is no change, be prepared to let him go.

A baby needs 30 cm of salvageable small bowel to live without artificial help, when they left for surgery they expected to find less than 12 cm, when they returned, 3 agonizing hours later, they had salvaged __49 cm__ of small bowel. It was like Christmas mixed with winning the lottery and finding a genie in a bottle. We were ecstatic. When I couldn’t describe the feeling of impending loss, this is the same, only pure joy. The most exalted feeling you could have outside of the gates of Heaven.

They said he was still in danger, he had been through a severe trauma and could still decide to give up at any time. Give it 7 days before you get too excited, they said. Pssshhh. yeah right. He WAS ALIVE! And he was expected to STAY ALIVE! We didn’t care about the diagnosis of Short Bowel Syndrome from losing so much small bowel (over 200cm). We were just happy to have him at all.

It was a LONG 7 days. But they passed. After 3 days, he woke up. After another few days, they let me hold him, and after 2 weeks, he was finally able to breathe on his own. Which is the day we took this picture, one of my favorites:

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After a few days of watching my baby boy get better, we finally had our visit from the endocrinologist. So much had happened that we totally forgot about the reason he was in the NICU to start with. It turns out that my son’s MRI showed an anomaly, where the pituitary should be, there was an empty space with a tight cluster of cells near the area where the stalk of the pituitary should be. They call that cluster an Ectopic Posterior Pituitary.

My sweet, long-awaited, baby boy was born with Congenital Panhypopituitarism, a rare and complicated Endocrine disorder.

What happened  was that as the brain developed, the pituitary tissue was somehow blocked from reaching the area it should be and therefore stopped developing. That means that ALL of the many things the pituitary controls, will never work. The Thyroid, the Adrenal Glands, the Reproductive Glands, and production of Growth Hormone are not functional in my son. That one tiny, pea-sized bit of tissue controls THAT much in our bodies and his was just not there.

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He would need daily medications just to live. He would appear perfectly normal, but any tiny cold could send him to the hospital, and add missing bowels to that… imagine what a stomach flu can do. I live in a constant fear of germs, though I can’t keep him quarantined, especially with three older sisters, so I spend a lot of time Praying that he will kick whatever cold he has caught and that he will not get another anytime soon… When he does become ill, he needs extra medication and, depending on the issue,  a broken bone, or an episode of vomiting, loss of consciousness, he will need an emergency injection to keep him stable until he can get to a hospital.

As you can see, there are many reasons why I would call my boy “Superman,” if anyone deserves the title, he certainly does.

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I think my Little Man had some sort of shock in the womb or in the NICU that caused him to crash somehow and that contributed to his bowel problem, but there is no way to know for sure.  We just Thank the Good Lord that we still have him.

After his last surgery, he continued to improve, very slowly. The hospital stay became a large part of our lives. We changed our schedules, learned to rely on friends and family. We learned a lot about ourselves and our ability to handle anything the world can throw at us.IMAG0544

It took him four long months to be able to leave the hospital, and a lot of dramatic medical things, but he finally did come home to us, a little broken, missing a few parts, but we like him that way. At least he will have battle scars to impress the chicks when he gets older.

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*I  Love this little Rough and Tumble, Mud-covered, Mess-maker of a little boy*

Thanks for reading his story.

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6 thoughts on “Panhypopituitarism. Multi-syllabic words aren’t always fun.

  1. I, too, love that little rough and tumble, mud-covered, mess-maker of a little boy… and his Mama 😀 Thank you for sharing this, you are so brave.

  2. He makes it so easy to fall in love with him. I know I did when I met him and saw his sweet little smile. I’m so happy to see him thriving and being a rascally toddler. He, as well as you, are an inspiration to me.

  3. Pingback: Amy White’s Story | Thank You Diana

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