Dear Mr. Sparks,
I found out I was pregnant with my first child in September of 2002. My pregnancy progressed very well, and by December, my husband and I discovered we were having a girl. Because I am diabetic, I had to have frequent ultrasounds throughout the pregnancy. In January, I was seeing the doctor once every two weeks to have level II ultrasounds. It was during one of these level II ultrasounds that the doctor saw something in Alex's lungs. He couldn't distinguish exactly what it was. He explained it could be Cystic Adematoid Malformation, which is basically cysts inside the lung tissue, or it could be left-sided diaphragmatic hernia and the bubbles he was seeing were from her colon being in her chest cavity. He said she was doing great, and breathing wonderfully, so there was nothing to be too worried about, and he would know more as she continued to grow. He explained that I should start bi-weekly non-stress tests and weekly ultrasounds. I had a meeting with the doctor, a neonatologist, and a perinatal nurse who explained that they were almost positive it was left-sided diaphragmatic hernia and that it wasn't necessarily common, but it wasn't life threatening. They said it would be much worse if she had right-sided diaphragmatic hernia. They explained how my birth plan would be, and stressed that Alexandria would be taken directly to the NICU and within 24 hours she would have a surgery to repair her diaphragm and then everything would be fine. They briefly mentioned ECMO, but they said they weren't going to go into details because Alex should never need ECMO. At 38 weeks, I had an amniocentesis to check her lung development. They said it was good, but not where they wanted it, so they did another amnio the following week. They said everything was great, her lung mass was normal and so they induced me on Tuesday, May 6th at 10 p.m. After several hours of pushing and finally using the suction, Alexandria Katelyn Job was born at 12:06 a.m. on Thursday, May 8, 2003. I was allowed to kiss her head and then she was whisked off to NICU. After getting some rest, my husband and I went to the NICU to see her and talk to the neonatologist. She showed us chest X-Rays and said "well, she definitely has diaphragmatic hernia, and it's a pretty severe case, as all of her abdominal organs have migrated into the chest cavity." She explained that they would wait three days to do surgery as infants usually respond best after a couple of days rather than doing a surgery within 24 hours of birth. At this time, as far as my husband and I knew, she had left-sided diaphragmatic hernia and a surgery would repair everything and within a month or two, she would come home. The following morning I was woken up by another neonatologist who came to explain that Alex had taken a turn for the worst during the evening and she had to be put on nitric oxide. He said they had to transport her to another hospital who had ECMO capabilities because she was probably going to need to be placed on ECMO. When we got to the other hospital, they did surgery right away to put her on ECMO. Then a neonatologist came out to tell us that Alex was stable, but her outlook was pretty much 50/50 at that point. He said we had to have been expecting this when we found out that she had right-sided diaphragmatic hernia. We explained that we were always told that she had left-sided diaphragmatic hernia, and that she would have a surgery and come home within a month or two. This was the first time we were hearing that not only was there a chance, there was a high possibility she would not survive. She was on ECMO for seven days. The second day she was on ECMO, her head swelled to three times the normal size, and they said it was due to the capillaries being opened up from the suction she had during birth. They said there was no bleeding on her brain, and it was just cosmetic, it wasn't hurting her. My husband and I were there everyday all day and we made the two hour drive home to sleep for 2 or 3 hours when the NICU was closed for the doctors to make their rounds. After seven days, she was able to be taken off of ECMO and the following day she had surgery to repair the diaphragm. The surgery took 4 hours, and when the surgeon came out to speak to us, she was smiling and very confident. She said Alex had about two thirds of her diaphragm missing, and they did not know this until they opened her up, but they used a Gortex patch, and successfully moved all of her organs back into her abdomen. She explained that they had to remove her appendix, but she would be fine without it. She said that Alex had enough lung mass that she should do wonderfully and that we were "out of the woods." My husband, our families, and I all went out to celebrate that night. I started asking the nurses when I would be able to hold her like the other moms in the NICU did with their babies. I still had never had the opportunity to even touch her, other than brief kisses. Every time my husband and I even talked to her, she would get excited and start moving around and making all of her monitors go off. Most of the time the nurses asked us to be quiet and not touch her, as she was very sensitive to stimulation of any kind. As hard as it was, for almost 3 weeks, we had very brief contact with Alex. Five days after her surgery, my brother and his girlfriend came to see her. As we were walking into the NICU, Alex was surrounded by doctors. The doctor on duty explained that her pulmonary hypertension was back, and she was not getting enough oxygen again. They had to put her back on nitric oxide, but she wasn't responding well. He told us that due to the swelling in her head, they could not put her back on ECMO. He told us she most likely wasn't going to make it. That night was the hardest night, because we believed the doctor 100% when they said we were out of the woods. We stayed by her bedside watching her monitors, and she stayed stable, but at low oxygenation levels all night long. In the morning, her doctor explained that although she was not doing too well, there were things they could try and not to give up hope yet. She remained the same throughout that day. Her doctor told us to go to a hotel and get some rest around midnight that night. He said he would not hesitate to call if something went wrong. We got a call shortly after 5 a.m. Both my husband and I knew it could not be good news at that hour. We rushed over to the hospital and the doctor explained that Alex's kidneys and liver had stopped functioning and she was in renal failure. They said she still had about twelve to fourteen hours until the poison in her blood stream would stop her heart, so we had time to spend with her. I asked about finally holding her, and they said we could hold her with the machines on, or we could make a decision to turn off the life support and spend the last few minutes with her, holding her. She fought too hard for us, so the decision was not hard. We could no longer allow her to suffer for us, so we signed the DNR and had the life support removed. We sat and rocked her and held her for the first time as she was dying. On Sunday, May 25, 2003, our little angel passed away. We are so grateful for the time we had with her, and now she is finally free of pain.
Sincerely,
Alexandria's parents, Robert & Kimberly Job (Illinois)
I found out I was pregnant with my first child in September of 2002. My pregnancy progressed very well, and by December, my husband and I discovered we were having a girl. Because I am diabetic, I had to have frequent ultrasounds throughout the pregnancy. In January, I was seeing the doctor once every two weeks to have level II ultrasounds. It was during one of these level II ultrasounds that the doctor saw something in Alex's lungs. He couldn't distinguish exactly what it was. He explained it could be Cystic Adematoid Malformation, which is basically cysts inside the lung tissue, or it could be left-sided diaphragmatic hernia and the bubbles he was seeing were from her colon being in her chest cavity. He said she was doing great, and breathing wonderfully, so there was nothing to be too worried about, and he would know more as she continued to grow. He explained that I should start bi-weekly non-stress tests and weekly ultrasounds. I had a meeting with the doctor, a neonatologist, and a perinatal nurse who explained that they were almost positive it was left-sided diaphragmatic hernia and that it wasn't necessarily common, but it wasn't life threatening. They said it would be much worse if she had right-sided diaphragmatic hernia. They explained how my birth plan would be, and stressed that Alexandria would be taken directly to the NICU and within 24 hours she would have a surgery to repair her diaphragm and then everything would be fine. They briefly mentioned ECMO, but they said they weren't going to go into details because Alex should never need ECMO. At 38 weeks, I had an amniocentesis to check her lung development. They said it was good, but not where they wanted it, so they did another amnio the following week. They said everything was great, her lung mass was normal and so they induced me on Tuesday, May 6th at 10 p.m. After several hours of pushing and finally using the suction, Alexandria Katelyn Job was born at 12:06 a.m. on Thursday, May 8, 2003. I was allowed to kiss her head and then she was whisked off to NICU. After getting some rest, my husband and I went to the NICU to see her and talk to the neonatologist. She showed us chest X-Rays and said "well, she definitely has diaphragmatic hernia, and it's a pretty severe case, as all of her abdominal organs have migrated into the chest cavity." She explained that they would wait three days to do surgery as infants usually respond best after a couple of days rather than doing a surgery within 24 hours of birth. At this time, as far as my husband and I knew, she had left-sided diaphragmatic hernia and a surgery would repair everything and within a month or two, she would come home. The following morning I was woken up by another neonatologist who came to explain that Alex had taken a turn for the worst during the evening and she had to be put on nitric oxide. He said they had to transport her to another hospital who had ECMO capabilities because she was probably going to need to be placed on ECMO. When we got to the other hospital, they did surgery right away to put her on ECMO. Then a neonatologist came out to tell us that Alex was stable, but her outlook was pretty much 50/50 at that point. He said we had to have been expecting this when we found out that she had right-sided diaphragmatic hernia. We explained that we were always told that she had left-sided diaphragmatic hernia, and that she would have a surgery and come home within a month or two. This was the first time we were hearing that not only was there a chance, there was a high possibility she would not survive. She was on ECMO for seven days. The second day she was on ECMO, her head swelled to three times the normal size, and they said it was due to the capillaries being opened up from the suction she had during birth. They said there was no bleeding on her brain, and it was just cosmetic, it wasn't hurting her. My husband and I were there everyday all day and we made the two hour drive home to sleep for 2 or 3 hours when the NICU was closed for the doctors to make their rounds. After seven days, she was able to be taken off of ECMO and the following day she had surgery to repair the diaphragm. The surgery took 4 hours, and when the surgeon came out to speak to us, she was smiling and very confident. She said Alex had about two thirds of her diaphragm missing, and they did not know this until they opened her up, but they used a Gortex patch, and successfully moved all of her organs back into her abdomen. She explained that they had to remove her appendix, but she would be fine without it. She said that Alex had enough lung mass that she should do wonderfully and that we were "out of the woods." My husband, our families, and I all went out to celebrate that night. I started asking the nurses when I would be able to hold her like the other moms in the NICU did with their babies. I still had never had the opportunity to even touch her, other than brief kisses. Every time my husband and I even talked to her, she would get excited and start moving around and making all of her monitors go off. Most of the time the nurses asked us to be quiet and not touch her, as she was very sensitive to stimulation of any kind. As hard as it was, for almost 3 weeks, we had very brief contact with Alex. Five days after her surgery, my brother and his girlfriend came to see her. As we were walking into the NICU, Alex was surrounded by doctors. The doctor on duty explained that her pulmonary hypertension was back, and she was not getting enough oxygen again. They had to put her back on nitric oxide, but she wasn't responding well. He told us that due to the swelling in her head, they could not put her back on ECMO. He told us she most likely wasn't going to make it. That night was the hardest night, because we believed the doctor 100% when they said we were out of the woods. We stayed by her bedside watching her monitors, and she stayed stable, but at low oxygenation levels all night long. In the morning, her doctor explained that although she was not doing too well, there were things they could try and not to give up hope yet. She remained the same throughout that day. Her doctor told us to go to a hotel and get some rest around midnight that night. He said he would not hesitate to call if something went wrong. We got a call shortly after 5 a.m. Both my husband and I knew it could not be good news at that hour. We rushed over to the hospital and the doctor explained that Alex's kidneys and liver had stopped functioning and she was in renal failure. They said she still had about twelve to fourteen hours until the poison in her blood stream would stop her heart, so we had time to spend with her. I asked about finally holding her, and they said we could hold her with the machines on, or we could make a decision to turn off the life support and spend the last few minutes with her, holding her. She fought too hard for us, so the decision was not hard. We could no longer allow her to suffer for us, so we signed the DNR and had the life support removed. We sat and rocked her and held her for the first time as she was dying. On Sunday, May 25, 2003, our little angel passed away. We are so grateful for the time we had with her, and now she is finally free of pain.
Sincerely,
Alexandria's parents, Robert & Kimberly Job (Illinois)
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