Robinson, Ian Riley

[left:0138bf2ea1]http://www.cherubs-cdh.org/Album/new/robinson-i.jpg[/left:0138bf2ea1]While awaiting the birth of our son, Ian, I had a relatively problem free pregnancy. Ian was to be the first child with my husband, although I had a 4 year old son from a previous relationship. At 20 weeks I had a sonogram telling us we were expecting a boy. "Get some bunkbeds for those boys," the doctor had said. He saw no problems with our son. We were planning a natural homebirth with a midwife. When my water broke on May 20, we were a bit concerned he was a little early, but there had been a bit of disagreement over my due dates. So we figured he was only 2-3 weeks early, he felt good sized, so we decided to go ahead with a homebirth. Except I was having no contractions. So we waited, tried inducing with castor oil twice, and had no labor, except 5 hours of mild contractions, that eventually stopped. Now I am convinced I knew there was something wrong, and that is why my body would not go into labor. Finally ,after 2 days of waiting, we went to the hospital for pitocin-induction. Then contractions started in the car on our way there. After only 4 hours of labor, our son was born, on May 23,12:31am. As soon as he slid out my mom snapped a picture. In that photo, he looks like a normal newborn: bloody and wet, with a grimace on his face, attempting to cry. But we never heard a cry. At first, I guessed he was just a little early, and needed some help to get breathing. But after working on him for 30 minutes in my room, I still heard nothing. Everyone's back was to me, and no one even said any thing to me or my husband. My midwife had told the pediatrician his name was Ian, and I heard them talking to him, telling him to breathe. Finally, they took him out of the room, still with no explanation. I laid there, speechless. I never said one word for the longest time. I think it was 3 or 4 hours before anyone told us that it was CDH. They also said CDH was associated with chromosome abnormalities and all these other horrible problems. So our baby would be transferred to Children's Hospital to rule out other problems. They presented my husband and I with consent forms to sign. But we couldn't sign them right away. My husband made everyone leave the room while we discussed the forms. We told the doctors we didn't want our baby treated inhumanely, and didn't want him to be kept alive if there was no hope for him. But we signed the transport form, so at least an accurate diagnosis could be made. At 6am they brought our son to my room in a plastic incubator. I couldn't stand to look at him like that. Covered in wires, not even able to breathe on his own. When the doctor opened the portholes so we could touch him, I couldn't bring myself to do it. My husband and mom followed the ambulance to Children's. When they came back,4 hours later, my husband was in higher spirits. He said there were no other problems except for the diaphragmatic hernia. So I had a little hope. I didn't go back to see the baby until that evening. I was kind of shocked to see that many wires and tubes on that itty bitty body. But our 4 year old thought nothing of it. He was just happy to see his new brother. When Ian was 1 day old he had the repair done. He came through surgery with no problem. And he continued to improve over the next week. He was on the high frequency vent, receiving nitric oxide , and gradually being weaned. The doctors had told us about ECMO, but it was probably not needed since the first week was going so well. On the evening of June 1st, he went downhill, unable to be oxygenated well. So my husband got a phone call for permission to begin ECMO. I left for the hospital with my mom, and by the time we arrived, he was out of surgery. When I walked in to see him, I thought he was dead. He was completely still, eyes open, arms and legs kind of sprawled out. I ran out crying, and the doctor later explained that Ian had been paralyzed with drugs for the placement of the ECMO catheters. I did not go back to see him till 2 days later. And then he looked great. That was the best he looked, because he was finally getting enough oxygen. After 13 days on ECMO, Ian still had a severe problem with pulmonary hypertension. The doctor said there was nothing else to do except take him off ECMO, wait and hope for the pressure in his lungs to go down. The next day he was still having 'episodes', where his heart rate would drop dramatically from any little stimulation. So they sedated him more. Still had 'episodes'. And he needed to be resuscitated, with epinephrine, which we were told was a 'code' drug. So finally, when Ian was 24 days old, we decided to remove his life support. There had been no improvement after that first week, and he looked worse than the day he got there. My husband and I, our 4 year old, and my mom all got to hold Ian before they removed his respirator. The nurse took photos as my oldest gently kissed Ian's little head. Ian even opened his eyes wide as my mom spoke to him. Finally I said we were ready to remove his vent. They took off all his IV's, and put a little white shirt on him. Then they took out his breathing tube. At this point, I still thought Ian would just start to breathe, that maybe all those doctors were wrong. But as I held our son, he made a little squeak, then nothing. He died in his mother's arms, right where he belonged. We were there just holding him for about 2 hours. Finally, I handed him to the nurse, and walked out of that hospital for the last time. I know we did the right thing by letting him go, and have never had any regrets. We let him have every chance to live, then gave him the chance to die peacefully. The following is a story my mom wrote for my 4 year old, which she read at Ian's memorial service.



IAN'S STORY by Grandma



Once upon a time, there was a little boy named Ian. Ian had a big brother named Daniel, and a mommy and a daddy. And he had lots of grandmas and grandpas, and great-grandmas and uncles and even a cousin. When Ian was born he was the most beautiful baby! He was chubby and pink, and had lots of long black hair that lay in curls along his neck. Ian's Mommy didn't think he had curls but his grandma did- and since this is Grandma's story, he had curls. Pretty soon the doctors realized that Ian was very sick, so they called in a baby doctor, called a pediatrician. Now this particular baby doctor looked like he was about 12 years old and he came to the hospital wearing an old T-shirt so wrinkled it looked like he'd slept in it. And maybe he had because Ian was born in the middle of the night and they probably had to wake him up. The pediatrician was very kind. He leaned over Ian in his little bed and said, "Hi there Ian. I bet you're wondering where you are and what's going on. I'll tell you all about it later, but first let's take care of you." So he did. The pediatrician took an x-ray of Ian's chest to see why he couldn't breathe and he found that Ian had a hole in his diaphragm and his little lungs were all squished. So the doctors and nurses put Ian in an incubator and then they put the incubator in an ambulance and took him to the Children's Hospital. When they got there the doctor told Ian's Daddy that they would take care of Ian. The nurses gave him medicine, and they took his temperature and his blood pressure and they put a tube in his mouth which was connected to a machine called a ventilator that would breathe for him. Then the doctor said Ian needed to have an operation. So when little baby Ian was only 11/2 days old he had an operation to patch his diaphragm and make room in his chest for his lungs to grow. And for a few days after that he seemed to be getting better. It was very hard work for a tiny baby to get well. Ian tried and he tried because he knew it would make his Mommy and Daddy very happy. He wanted to make his Mommy and Daddy happy because he knew they loved him, just like they loved Daniel. It was kind of funny to be in the hospital. Ian was in a bed with a little heater above so he didn't need any blankets. The nurses put little glowing red E.T. lights on his finger and his toe, to check the oxygen in his blood. And they took some of his blood every day to check for infection. They took x-rays to look at his lungs and sonograms to look at his head and echoes to look at his heart. They poked needles in him to give him medicine and food because he couldn't eat real food. And they kept the tube in his mouth that was connected to the ventilator because he still couldn't breathe all by himself. Ian's Mommy and Daddy and big brother Daniel came to visit him nearly every day. Ian always liked it when they came because he recognized their voices even before he opened his eyes. And Daniel brought him his very own Pooh Bear for his Birth Day present, and every time Daniel came he wound it up so Ian could hear the Winnie the Pooh music. Ian's Grandmas and Grandpas came to visit and he was glad to know they were there because he knew they loved him too. After a while Ian needed more help to breathe so the doctors told his Mommy and Daddy that there was a special machine that would help put oxygen in Ian's body so he could let his lungs rest. This machine had a name. It was called ECMO. The doctor put some more tubes in Ian's body to connect him to ECMO and he tried some more to get well. One day he was trying so hard that he was wiggling all over. He wiggled his hands with the E.T. lights and he wiggled his toes 'till his little booties fell off. Ian's nurse told his Mommy, "I think he has ants in his pants today." And his Mommy laughed. Ian had a hard time opening his eyes because of all the medicine and because he was so tired from being sick. But when he opened his one eye and looked all around Daniel and Mommy and Daddy were so excited. Ian looked like he was trying to figure out what was going on and see what the nurses were doing. Then the next day he opened both his eyes and Mommy told Daddy to come quick and take a picture. But Ian just wasn't able to get well, even with the help of all his doctors and nurses and medicine and machines. Ian couldn't talk but his Mommy and Daddy knew what he was trying to tell them. He was telling them that he was so sick he would never be able to get well and he wouldn't be able to come home with them. Ian's Mommy and Daddy were very sad because they wanted their baby boy to come home and to grow up with his big brother Daniel. They were sad because Ian would never get to ride on Daniel's ATC and he would never get to help his Daddy plant beanstalk tomatoes. He would never get to play games on Grandpa Rob's computer or listen to his Grandmas read him bed-time stories. But most of all he would never get to snuggle with his Mommy in the quiet night. But Mommy and Daddy knew what was best for Ian and for Daniel and for their family. They had made all the decisions for Ian's care and medical treatment with his best interest always in their hearts. They accepted Ian's need to stop trying to get well with grace and dignity and with respect for their son. So Mommy and Daddy and Daniel went to Ian's room at the hospital. The nurses took all the tubes out of Ian's little body except for the one connected to the respirator. They put a little white shirt on him that covered the bandages on his tummy. They took the glowing red E.T. lights off his finger and his toe. They wrapped him in a blanket and let his Mommy hold him. This was the first time his Mommy got to hold him and she was happy and sad all at the same time. And she cried. Big brother Daniel gently touched Ian's little toes as his Mommy held him in her arms. Daddy put his arms around Mommy and Ian and Daniel. Then Daniel remembered Pooh Bear. So he ran to the other side of the room and got Pooh Bear, then hopped up on Daddy's knee and wound up Pooh so Ian could hear the music. Daniel began to softly sing the Winnie the Pooh song along with the music, and Ian was happy. The End.

I hope this does some good for someone else who are or have been in this situation.



Written by Ian's mom, Angela Robinson (California)
1999