Dear Mr. Sparks,
Let me start by telling you all that at the age of 28 and being a single mother, I decided to have a tubal ligation in Jan. 1997. I met my husband a couple of months after my surgery and married him in Sept., 1997. He is 8 1/2 years my junior has never been married or had children. So having any children together seemed out of the question.
I got pregnant in Nov. without realizing it. On Jan. 1, 1998 we talked about the possibility, but quickly decided the absence of periods was due to a hormonal imbalance.
I went to the doctor in April to get my other children a check-up. I discussed my problem with our doctor. He explained that recent studies had showed that 1 in 300 tubals failed so he did a pregnancy test. It came back positive.
My husband was thrilled at the idea of having "another" baby. I on the other hand kept insisting that I "could not give birth again". And I refused to tell anyone that I was pregnant which seemed too strange. I had always gotten so excited when I had gotten pregnant before as I had been told at the age of 19 that I would never have children. I had endometriosis so badly.
It didn't take more than another couple of weeks before my mother noticed that I was pregnant. I first went to the doctor on May 6, 1998. My uterus was about two weeks ahead of what it should be so an ultrasound was ordered for two days later.
Cloudey's CDH was found. I knew something was wrong because of the way the technician was treating us. When we left, I told my husband and my children of my suspicion. My doctor called the next day to explain what he could. At first he was very hopeful. Another woman under his care had given birth to a baby with CDH in March, that had survived and was doing well.
He said that he was sending me 300 miles away to a hospital capable of delivering Cloudey. As it turned out I had to quit seeing him after 2 visits, due to a personal conflict with him (he gave us NO hope for Cloudey).
So it was July 13 when we went for our first and only visit with the doctor who would deliver Cloudey. He gave us very little hope. But it was better than none. We received the only information so far on CDH and talked to the neonatal specialist who would care for our baby.
We drove to the hospital again on Aug. 10 to have labor induced, so we wouldn't further risk Cloudey's health by having her born and life flighted.
Other than the stress of knowing that Cloudey had CDH and not knowing if she would live, the pregnancy was very normal.
My labor induction was changed to the 11th after arriving at the hospital, because I have short labors.
After 2 hours of hard labor I had Cloudey Rae. She was passed threw a window to the nursery and put immediately on a ventilator. She had been born 20 days before her due date. At birth she was diagnosed with the following; sepsis, hypotension, hypovolemia, persistent pulmonary hypertension, coagulopathy. She was immediately moved to a children's hospital where we were told she would most likely die before she was 12 hours old. The doctor said that they could fly her to Phoenix for ECMO, but she probably would not survive the flight. George, my husband, and I went to talk about it. We soon decided to refuse the ECMO, and leave everything in God's hands. By the time we made it back upstairs, she was doing a lot better. Her 2% chance had turned to a 50% chance.
She underwent surgery on Aug 12. Cloudey's postoperative diagnosis was; left Congenital Diaphragmatic Hernia, Bochdalek's hernia. Procedure was; Repair of hernia with abdominal wall muscle flap. Amazingly enough she surprised everyone and survived surgery. She was on an Oscillator and Nitric Oxide. Things were looking up.
Until day 9. She was diagnosed with pseudomonas, left pneumothorax, and right ventricular hypertrophy. We had been trying to correct a right pleural effusion since day 3 and hypertriglyceridemia since day 8. One left chest tube had been placed on Aug. 12. On Aug. 28th, they put one more on the left side, one on the right and repositioned the first one. This was done because of chylothorax, right.
She was started on feedings on Sept 1. They discontinued it Sept 4. She had severe edema to the point she looked as though she was extremely deformed.
On Sept 7 Cloudey was diagnosed with BPD. A sever case of BPD. She was fighting a cogulase negative staph infection. It all seemed to be slipping away. She had come off a jet vent on Sept 3 and had weaned significantly off nitric oxide. Now she was back on the oscillator vent and 10ppm of nitric.
On Sept 11 she suffered from seizures. Cystic BPD was confirmed. Further diagnosis was; Hypothyroid, Sepsis (again) and reactive airway disease.
Nothing seemed to be helping her. We could no longer keep praying for God to keep her alive. We could only pray for His will to be done.
My husband had had to return to work on Aug 31 and had driven the 350 miles on Friday and back on Sunday night. Our other children had been to see her and spent time touching and talking to Cloudey.
On Sept 11 I drove down to pick up my husband and kids to come and visit. We decided just before leaving not to take any of our other 3 kids back up. We felt we needed that weekend alone with her.
They removed her chest tubes before we arrived back to the hospital. She looked so sad. Her belly was dark blue from the infection and was so incredibly swollen.
We spent the entire weekend at the hospital. I could hardly bring myself to leave her long enough to eat. I had decided to go home with my other kids for the week. I felt as though I was keeping her holding on and making her endure needless pain. I'm not as strong as some of you, I couldn't just say no more.
We left Sunday night knowing it would be the last time we saw our baby alive.
Monday things were the same as when we left. I called about every hour. By Tuesday I was sure that since things had not improved that she was getting tired of fighting. At 11p.m. when we called things had started going down hill. We started packing by 11:30 after talking to the doctor she said Cloudey was doing fair, we really didn't need to come up there. Just as we finished packing the car at midnight they called and said to come to the hospital ASAP with 10 minutes after hanging up the hospital called back. Cloudey had coded. Within 30 minutes they said resuscitation effects were not working. But they would try some more. At 1:43am on Sept 16, 1998 Cloudey Rae Anders was declared dead. Cause: cardiorespiratory failure.
All I can say now is that I love her so much and miss her with every fiber of my being.
Sincerely,
Cloudey's mom, Rose M. Anders (Utah)
Let me start by telling you all that at the age of 28 and being a single mother, I decided to have a tubal ligation in Jan. 1997. I met my husband a couple of months after my surgery and married him in Sept., 1997. He is 8 1/2 years my junior has never been married or had children. So having any children together seemed out of the question.
I got pregnant in Nov. without realizing it. On Jan. 1, 1998 we talked about the possibility, but quickly decided the absence of periods was due to a hormonal imbalance.
I went to the doctor in April to get my other children a check-up. I discussed my problem with our doctor. He explained that recent studies had showed that 1 in 300 tubals failed so he did a pregnancy test. It came back positive.
My husband was thrilled at the idea of having "another" baby. I on the other hand kept insisting that I "could not give birth again". And I refused to tell anyone that I was pregnant which seemed too strange. I had always gotten so excited when I had gotten pregnant before as I had been told at the age of 19 that I would never have children. I had endometriosis so badly.
It didn't take more than another couple of weeks before my mother noticed that I was pregnant. I first went to the doctor on May 6, 1998. My uterus was about two weeks ahead of what it should be so an ultrasound was ordered for two days later.
Cloudey's CDH was found. I knew something was wrong because of the way the technician was treating us. When we left, I told my husband and my children of my suspicion. My doctor called the next day to explain what he could. At first he was very hopeful. Another woman under his care had given birth to a baby with CDH in March, that had survived and was doing well.
He said that he was sending me 300 miles away to a hospital capable of delivering Cloudey. As it turned out I had to quit seeing him after 2 visits, due to a personal conflict with him (he gave us NO hope for Cloudey).
So it was July 13 when we went for our first and only visit with the doctor who would deliver Cloudey. He gave us very little hope. But it was better than none. We received the only information so far on CDH and talked to the neonatal specialist who would care for our baby.
We drove to the hospital again on Aug. 10 to have labor induced, so we wouldn't further risk Cloudey's health by having her born and life flighted.
Other than the stress of knowing that Cloudey had CDH and not knowing if she would live, the pregnancy was very normal.
My labor induction was changed to the 11th after arriving at the hospital, because I have short labors.
After 2 hours of hard labor I had Cloudey Rae. She was passed threw a window to the nursery and put immediately on a ventilator. She had been born 20 days before her due date. At birth she was diagnosed with the following; sepsis, hypotension, hypovolemia, persistent pulmonary hypertension, coagulopathy. She was immediately moved to a children's hospital where we were told she would most likely die before she was 12 hours old. The doctor said that they could fly her to Phoenix for ECMO, but she probably would not survive the flight. George, my husband, and I went to talk about it. We soon decided to refuse the ECMO, and leave everything in God's hands. By the time we made it back upstairs, she was doing a lot better. Her 2% chance had turned to a 50% chance.
She underwent surgery on Aug 12. Cloudey's postoperative diagnosis was; left Congenital Diaphragmatic Hernia, Bochdalek's hernia. Procedure was; Repair of hernia with abdominal wall muscle flap. Amazingly enough she surprised everyone and survived surgery. She was on an Oscillator and Nitric Oxide. Things were looking up.
Until day 9. She was diagnosed with pseudomonas, left pneumothorax, and right ventricular hypertrophy. We had been trying to correct a right pleural effusion since day 3 and hypertriglyceridemia since day 8. One left chest tube had been placed on Aug. 12. On Aug. 28th, they put one more on the left side, one on the right and repositioned the first one. This was done because of chylothorax, right.
She was started on feedings on Sept 1. They discontinued it Sept 4. She had severe edema to the point she looked as though she was extremely deformed.
On Sept 7 Cloudey was diagnosed with BPD. A sever case of BPD. She was fighting a cogulase negative staph infection. It all seemed to be slipping away. She had come off a jet vent on Sept 3 and had weaned significantly off nitric oxide. Now she was back on the oscillator vent and 10ppm of nitric.
On Sept 11 she suffered from seizures. Cystic BPD was confirmed. Further diagnosis was; Hypothyroid, Sepsis (again) and reactive airway disease.
Nothing seemed to be helping her. We could no longer keep praying for God to keep her alive. We could only pray for His will to be done.
My husband had had to return to work on Aug 31 and had driven the 350 miles on Friday and back on Sunday night. Our other children had been to see her and spent time touching and talking to Cloudey.
On Sept 11 I drove down to pick up my husband and kids to come and visit. We decided just before leaving not to take any of our other 3 kids back up. We felt we needed that weekend alone with her.
They removed her chest tubes before we arrived back to the hospital. She looked so sad. Her belly was dark blue from the infection and was so incredibly swollen.
We spent the entire weekend at the hospital. I could hardly bring myself to leave her long enough to eat. I had decided to go home with my other kids for the week. I felt as though I was keeping her holding on and making her endure needless pain. I'm not as strong as some of you, I couldn't just say no more.
We left Sunday night knowing it would be the last time we saw our baby alive.
Monday things were the same as when we left. I called about every hour. By Tuesday I was sure that since things had not improved that she was getting tired of fighting. At 11p.m. when we called things had started going down hill. We started packing by 11:30 after talking to the doctor she said Cloudey was doing fair, we really didn't need to come up there. Just as we finished packing the car at midnight they called and said to come to the hospital ASAP with 10 minutes after hanging up the hospital called back. Cloudey had coded. Within 30 minutes they said resuscitation effects were not working. But they would try some more. At 1:43am on Sept 16, 1998 Cloudey Rae Anders was declared dead. Cause: cardiorespiratory failure.
All I can say now is that I love her so much and miss her with every fiber of my being.
Sincerely,
Cloudey's mom, Rose M. Anders (Utah)
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