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01-23-2007, 05:21 PM
[left:efeb0dfac7]http://www.cherubs-cdh.org/Album/new/porter2.jpg[/left:efeb0dfac7]The only way I can start this letter is to say God Bless you for the work you are doing. You spoke to my husband Bob back in June when we first found out our baby boy has right sided CDH. At that point when he spoke to you, we had only known for about 3 days (if I'm remembering correctly!). As you can imagine, we were terrified, confused, UPSET, and really did not know what we were facing. We had managed to get some information from the University of Washington medical library, and well as from the Children's Hospital in Seattle. Unfortunately, all the articles we first read scared us even more as they were above our understanding, and the first line in virtually all of them was that the mortality rate for these babies was great. When we received the copies of the newsletters you sent us, we were comforted by the stories of all of the cherubs who pulled through. However, to be honest, it was a shock to learn of the additional problems that CDH can cause. We quickly realized that the road ahead for all 3 of us was not going to be easy!
I would like to tell you a little about Bob and I. We live in Kent, Washington, which is a few miles south of Seattle. We are newlyweds, just having been married August 12, 1995. The pregnancy was kind of a surprise, but we were thrilled because we knew even before we were married that we both wanted children. The early pregnancy was uneventful, I was blessed with an easy time. I had only a touch of morning sickness and that did not even last very long. We had our fist ultrasound on May 15th. During the ultrasound, the technician was able to tell us it was a boy and we were so in awe of seeing him move around! However, towards the end, she did call in the doctor on duty to look at our baby. We were scared, but they explained to us that because of the baby's position, there were a few measurements they were unable to get. We made arrangements to come back on Monday the 20th for a quick ultrasound before my regular monthly doctor's appointment. That morning, the news was not so great. They were able to see that the heart was slightly displaced, but they could not tell exactly why. We scheduled a follow up ultrasound for 4 weeks later. We began with an ultrasound at the office we had been going to previously. After scanning for about an hour, they sent us to their main hospital in Seattle. We were scanned for about 2 hours there by 2 doctors. Later that day, we were back at my regular OB's office, where we finally heard the diagnosis . It was as if we ran smack into a cement wall, it took the breath right out of us. As the doctor was describing what she knew about the condition, I felt like she was talking in some foreign language and I just couldn't seem to grasp what she was saying. Her suggestion was that we speak to the team at UCSF. She sent them a video of an ultrasound and they contacted her with the news that we would not be candidates for the actual repair surgery as the liver was herniated into the chest. They explained to her that we would be eligible for the tracheal occlusion. We flew to San Francisco for evaluation and to meet with the team. We left San Francisco with so much information regarding care of the baby when he is born (if no intervention in utero is done) and about the in uterine surgery, that we were simply overwhelmed. After spending all weekend deep in prayer and discussion between the two of us, we decided we will opt for the in uterine surgery. It was such a huge decision, but we feel God is guiding us and we will make it through. The surgery is scheduled for July 30th.
We will keep in touch and let you know how everything goes. I'm praying every second that we will have a miracle to share with you and the CHERUBS family. Thank you so much Dawn, for being an angel yourself and doing so much to reach out to all of us who must deal with this experience. We are enclosing a small donation to hopefully help in postage, paper, etc.. God Bless You and Your Cherub and Your Family!
Updated 1996:
Hi! I have so much to tell you. I'll begin with the very sad news that Max was too sick to make it and he passed away September 14th. We went to San Francisco July 29th for the in utero surgery. Unfortunately I was showing signs of premature labor (I was dilated to a cm.) so Dr. Harrison felt it would be far too risky to go ahead with the surgery, so we didn't. We stayed in San Francisco, I was in the hospital for 3 and half days, then we went to live in a motel room. The doctors wanted me to get to 36 weeks to insure Max would be big enough for ECMO. I was on elevated bed rest for 5 weeks. Bob was able to be with me the entire time, thank God! He took really good care of me. I was able to get up to go to the bathroom and go to the doctor 2 times a week so that was good. I started a few letters to you, but never finished them. We made it 2 days short of week 35 when they induced labor on September 1st. 2 days prior an ultrasound (about the millionth one I had!!!) showed that Max had developed hydrops around his heart and under his scalp. They felt it would endanger Max if he wasn't born then and they were able to tell he already weighed 5lbs which was big enough for ECMO. I was only in hard labor for about 5 hours, then Max came quickly!!! He was born at 11:49 pm. We even heard a small cry at first as they were taking him away. Dawn- he was such a beautiful boy- I'm so thankful I got to deliver him naturally- it was a wonderful experience.
Max did ok at first. They put him on a high frequency ventilator and he was doing well for the first 2 hours. Then they had to put him on ECMO, because he started going downhill fast. It was very upsetting at first to see him on the ECMO machine, but we knew it was keeping him alive and giving him the chance he needed. they didn't do surgery until he was 1 week old because when they had tried to take him off ECMO he didn't do very good until the 6th day. Surgery went well, but he went downhill after that. he began bleeding around his liver the day after surgery. They were able to stop it by trying an experimental procedure. But his tummy began swelling and they couldn't figure out why. Max had a pretty bad hernia- the entire right side was missing. His whole liver and some bowels were herniated. They took him off ECMO on September 13, 1996 and he simply could not do it on his own. We were at the hospital that night. We finally left his bedside at 11:00 to go get some sleep. I woke up at 2:45 and went back to him. When I walked into the bay and I saw the doctor's face, I just knew this was it. He told me to go get Bob because Max was struggling so bad. I did and we took a moment to pray. We went back and held Max on the ventilator, he was already turning blue. They took him off and he passed away at 5:30 am. God I miss him so. We had so much hope throughout but God had something else in mind. We hated seeing Max suffer the way he did. We never got to hear him cry other than the little cry when he was first born. At least we have that. We spent as much time as we could with him, but then again we were always worried we weren't spending enough time with him. It was so draining we were surprised at how tired we always were. We made the arrangements necessary to transport Max home and we left San Francisco the night he died. Our friends had driven our truck down to us 3 weeks prior so we drove home. We stopped twice and got home on Monday. It seemed so wrong to be coming home without our son. But it was nice to be home. We had Max's service on September 20th.
Bob went back to work 2 and a half weeks ago. I'm going back Nov. 1st. I think we are doing ok. We are able to talk to each other about how we are feeling and we have a very wonderful support system of family and friends. We've bought some really good books and we've joined a support group. We just miss him so much, the pain is so great at times. We know he's in a wonderful place and most importantly he isn't suffering! The picture I've sent is my favorite of him. He is 6 days old here. He looked so much like Bob! I always said I wanted him to look like Bob but have my hair and that's exactly what he came as!
Dawn, I'm so sorry it took so long for me to contact you. I know you were worried about us. I really want to stay a part of CHERUBS because if I, or Bob can ever help someone we really want to. I pray that no other parents will go through what we did. I know that's not realistic but I still feel that way! We were, are, and always will be so impressed and thankful for the doctors and nurses we had taking care of Max. They were great. The nurse on duty the night/morning Max passed away was especially wonderful. Well, I'm sure I'm leaving a lot of details out, but I wanted to let you know all that happened before anymore time went by. Hope all is good with you and your family. I'll keep in touch!
Updated 1998:
It has been almost (next week September 1st is our son's birthday) two years since our Max was born and died. Sometimes seems like yesterday, sometimes like years. We have a healthy daughter, Madeline, (I'm sending a photo) born November 18, 1997. Although she is AMAZING and WONDERFUL!!! she hasn't replaced our Max. Sometimes I even find myself looking at her and I get overwhelmed with grief wondering if Max would smile the way she does, or giggle, or be so darn stubborn and adventurous as she is at only 9 months!! I see him in her and I talk to her about her brother. I have a hard time explaining these feelings to people, so many people think that because we have Madeline, our pain in losing Max is gone. Oh well, I know there are people out there who know what we know, so thank God for you and them.
Written by Max's mom, Corinne Porter (Washington)
1996, Updated 1998
I would like to tell you a little about Bob and I. We live in Kent, Washington, which is a few miles south of Seattle. We are newlyweds, just having been married August 12, 1995. The pregnancy was kind of a surprise, but we were thrilled because we knew even before we were married that we both wanted children. The early pregnancy was uneventful, I was blessed with an easy time. I had only a touch of morning sickness and that did not even last very long. We had our fist ultrasound on May 15th. During the ultrasound, the technician was able to tell us it was a boy and we were so in awe of seeing him move around! However, towards the end, she did call in the doctor on duty to look at our baby. We were scared, but they explained to us that because of the baby's position, there were a few measurements they were unable to get. We made arrangements to come back on Monday the 20th for a quick ultrasound before my regular monthly doctor's appointment. That morning, the news was not so great. They were able to see that the heart was slightly displaced, but they could not tell exactly why. We scheduled a follow up ultrasound for 4 weeks later. We began with an ultrasound at the office we had been going to previously. After scanning for about an hour, they sent us to their main hospital in Seattle. We were scanned for about 2 hours there by 2 doctors. Later that day, we were back at my regular OB's office, where we finally heard the diagnosis . It was as if we ran smack into a cement wall, it took the breath right out of us. As the doctor was describing what she knew about the condition, I felt like she was talking in some foreign language and I just couldn't seem to grasp what she was saying. Her suggestion was that we speak to the team at UCSF. She sent them a video of an ultrasound and they contacted her with the news that we would not be candidates for the actual repair surgery as the liver was herniated into the chest. They explained to her that we would be eligible for the tracheal occlusion. We flew to San Francisco for evaluation and to meet with the team. We left San Francisco with so much information regarding care of the baby when he is born (if no intervention in utero is done) and about the in uterine surgery, that we were simply overwhelmed. After spending all weekend deep in prayer and discussion between the two of us, we decided we will opt for the in uterine surgery. It was such a huge decision, but we feel God is guiding us and we will make it through. The surgery is scheduled for July 30th.
We will keep in touch and let you know how everything goes. I'm praying every second that we will have a miracle to share with you and the CHERUBS family. Thank you so much Dawn, for being an angel yourself and doing so much to reach out to all of us who must deal with this experience. We are enclosing a small donation to hopefully help in postage, paper, etc.. God Bless You and Your Cherub and Your Family!
Updated 1996:
Hi! I have so much to tell you. I'll begin with the very sad news that Max was too sick to make it and he passed away September 14th. We went to San Francisco July 29th for the in utero surgery. Unfortunately I was showing signs of premature labor (I was dilated to a cm.) so Dr. Harrison felt it would be far too risky to go ahead with the surgery, so we didn't. We stayed in San Francisco, I was in the hospital for 3 and half days, then we went to live in a motel room. The doctors wanted me to get to 36 weeks to insure Max would be big enough for ECMO. I was on elevated bed rest for 5 weeks. Bob was able to be with me the entire time, thank God! He took really good care of me. I was able to get up to go to the bathroom and go to the doctor 2 times a week so that was good. I started a few letters to you, but never finished them. We made it 2 days short of week 35 when they induced labor on September 1st. 2 days prior an ultrasound (about the millionth one I had!!!) showed that Max had developed hydrops around his heart and under his scalp. They felt it would endanger Max if he wasn't born then and they were able to tell he already weighed 5lbs which was big enough for ECMO. I was only in hard labor for about 5 hours, then Max came quickly!!! He was born at 11:49 pm. We even heard a small cry at first as they were taking him away. Dawn- he was such a beautiful boy- I'm so thankful I got to deliver him naturally- it was a wonderful experience.
Max did ok at first. They put him on a high frequency ventilator and he was doing well for the first 2 hours. Then they had to put him on ECMO, because he started going downhill fast. It was very upsetting at first to see him on the ECMO machine, but we knew it was keeping him alive and giving him the chance he needed. they didn't do surgery until he was 1 week old because when they had tried to take him off ECMO he didn't do very good until the 6th day. Surgery went well, but he went downhill after that. he began bleeding around his liver the day after surgery. They were able to stop it by trying an experimental procedure. But his tummy began swelling and they couldn't figure out why. Max had a pretty bad hernia- the entire right side was missing. His whole liver and some bowels were herniated. They took him off ECMO on September 13, 1996 and he simply could not do it on his own. We were at the hospital that night. We finally left his bedside at 11:00 to go get some sleep. I woke up at 2:45 and went back to him. When I walked into the bay and I saw the doctor's face, I just knew this was it. He told me to go get Bob because Max was struggling so bad. I did and we took a moment to pray. We went back and held Max on the ventilator, he was already turning blue. They took him off and he passed away at 5:30 am. God I miss him so. We had so much hope throughout but God had something else in mind. We hated seeing Max suffer the way he did. We never got to hear him cry other than the little cry when he was first born. At least we have that. We spent as much time as we could with him, but then again we were always worried we weren't spending enough time with him. It was so draining we were surprised at how tired we always were. We made the arrangements necessary to transport Max home and we left San Francisco the night he died. Our friends had driven our truck down to us 3 weeks prior so we drove home. We stopped twice and got home on Monday. It seemed so wrong to be coming home without our son. But it was nice to be home. We had Max's service on September 20th.
Bob went back to work 2 and a half weeks ago. I'm going back Nov. 1st. I think we are doing ok. We are able to talk to each other about how we are feeling and we have a very wonderful support system of family and friends. We've bought some really good books and we've joined a support group. We just miss him so much, the pain is so great at times. We know he's in a wonderful place and most importantly he isn't suffering! The picture I've sent is my favorite of him. He is 6 days old here. He looked so much like Bob! I always said I wanted him to look like Bob but have my hair and that's exactly what he came as!
Dawn, I'm so sorry it took so long for me to contact you. I know you were worried about us. I really want to stay a part of CHERUBS because if I, or Bob can ever help someone we really want to. I pray that no other parents will go through what we did. I know that's not realistic but I still feel that way! We were, are, and always will be so impressed and thankful for the doctors and nurses we had taking care of Max. They were great. The nurse on duty the night/morning Max passed away was especially wonderful. Well, I'm sure I'm leaving a lot of details out, but I wanted to let you know all that happened before anymore time went by. Hope all is good with you and your family. I'll keep in touch!
Updated 1998:
It has been almost (next week September 1st is our son's birthday) two years since our Max was born and died. Sometimes seems like yesterday, sometimes like years. We have a healthy daughter, Madeline, (I'm sending a photo) born November 18, 1997. Although she is AMAZING and WONDERFUL!!! she hasn't replaced our Max. Sometimes I even find myself looking at her and I get overwhelmed with grief wondering if Max would smile the way she does, or giggle, or be so darn stubborn and adventurous as she is at only 9 months!! I see him in her and I talk to her about her brother. I have a hard time explaining these feelings to people, so many people think that because we have Madeline, our pain in losing Max is gone. Oh well, I know there are people out there who know what we know, so thank God for you and them.
Written by Max's mom, Corinne Porter (Washington)
1996, Updated 1998