Our baby Lachlan was born Friday 7:19am April 17. He passed peacefully in his mummy's arms Saturday 1:30am April 25, surrounded by the immense love from his parents.
His little light had gone out before or shortly after he was born, but it took several days before we realized this. He had fought so bravely to survive so that we could meet, for which we are so grateful to him. We told him that we would always love him, we would always be with him, that we we would always miss him, that he shouldn't be scared and that he should rest. The doctors helped us make sure that he did not suffer in his final hours. And with the hardest choice we have ever been given, we made sure that he would only know our love and would not have a lifetime of pain and suffering without joy.
After removing all but one tube and monitor, we held baby Lachlan for the evening wrapped only in a soft blanket so that we could rock him and sing him to sleep. This time with him was precious. We heard his voice as he breathed for himself without the ventilator. We stroked his head and hands, and covered him with soft kisses. He was so loved by us, more than we could ever had imagined.
While he visited us for 8 days, we told him all about our lives and the world. We told him about our immediate and extended families. His names. Our careers and our friends. We told him about girls, and Australia. We told him about movies and TV shows. We told him our favorite foods and colors. The cars we've driven, and funny stories and experiences we've had. We sang to him and played him soothing music. We massaged his legs and feet with baby massage oil. We combed his beautiful blonde hair with our fingertips. We blew on his hair so that he could know what it is to feel the wind. He could see the sky from his hospital room. We left smell cloths near his nose, that smelled like mummy and daddy. We left them for him to sleep with for eternity.
We don't know if he could tell that any of this happened. If he could, then we know that he felt loved. Many believe that babies can dream from 28 weeks in the womb. We hope that he got to experience life for the month before he was born, within his dreams, and that they were filled with our voices and love for him.
Saturday, April 25, 2009
Family meeting
After the family meeting on Wednesday we found out that our little boy was much more injured than we could have imagined. His little light had already gone out.
The doctors at the meeting (two neonatologists, the neurologist and the nefrologist) and Neonatal ICU's social worker were all in consensus about his prognosis. They had also discussed Lachlan with many of the the other neonatologists working at the hospital, who had also agreed. The MRI showed Lachlan's brain damage to be comprehensive and extremely severe. It affected all parts of his brain, there was literally nothing undamaged. It was so pervasive and severe that there was no chance or hope of the brain successfully rewiring or recovering in any way. And the damage would get worse at least over the immediate future.
His motor functions would be severely impaired by large amounts of bleeding and a clot in his ventricles. This would bring about severe cerebral palsy: he would not be able to move. He would not be able to swallow. The clot would get larger, causing further damage, and would not go away by itself due to its size. It would cause him pain due to swelling. To drain fluid buildup from his ventricle, he would need multiple brain surgeries as he grew. These surgeries would be necessary to reduce his pain, and also to give him a chance for survival.
Lachlan's cortex had been devastated and experienced massive bleeding. Like his motor control, this meant that his intellectual facilities were severely impacted for life. He wouldn't develop learning abilities. It wasn't that he would develop slowly. He wouldn't ever be able to recognize us, smile, or reason. Due to the location of one massive amount of bleeding, it was also unlikely that he'd ever be able to see. The responses the neurologist saw in his eyes were likely reflexive from the brain stem and not from his visual processing center.
The doctors were in consensus that Lachlan would have a "very very poor outcome" and that he would have "no quality of life", due to the extent of his brain damage. After the ultrasound but before the meeting we thought that Lachlan would be quite impaired, but he could enjoy a sunny day, a visit to the park, or attention from our pet cat. We had come to terms with such an outlook for Lachlan. The news from the MRI was devastating.
They also said that Lachlan would lead a life of suffering.
Lachlan stopped urinated by himself which worried the doctors. He had to be catheterized again, and the nefrologist said that as he aged he would have to be catheterized frequently to empty his bladder. Otherwise he would develop painful and life threatening bladder infections (even if his bladder was emptied late just once).
His cerebral palsy would cause painful stiffness, which could be mitigated with drugs. However these have their own side-effects and are not perfect. More seriously, Lachlan would suffer from recurrent pneumonia. Infections could take hold in a very very short period of time. This reduced his life expectancy and also would bring great suffering to him.
While his kidneys appeared to be improving, they would remain severely impaired. Subsequent infections (e.g. pneumonia/bladder) would deliver further punishment. Before the family meeting, we thought that if they did shutdown, there could be a chance for transplant because his other organs seemed to be slowly coming back. The nefrologist said that with his extensive brain damage he would never be considered for transplant, so a life-time of dialysis could be waiting for him. She said that it "would be cruel" to him, and that they would recommend against dialysis.
Lachlan would develop severe epilepsy. Seizures would continue into adulthood but grow painful for him to bear.
Having any one of these conditions alone would not be issue enough to form a family meeting. But taken together these conditions meant that Lachlan would suffer with certainty.
At the end of the meeting the doctors said that we had to make a choice about whether to maintain Lachlan's life support. We could cease support to spare our son a painful life with quantity but without quality. Or we could continue supporting Lachlan until technology was not able to maintain him any longer. The doctors were clear about the prognosis described above as being almost certain. They said that his damage meant that short of a miracle, his life would unfold as they had discussed. Also, the doctors' discussion was objective and focussed only on Lachlan's interests. They did not consider our role as guardians and care givers.
This is the decision that no parent should have to make. It is our responsibility as parents to make it for our son. Our great love for Lachlan would lead us to making the decision as best as we could, with what we think he would want, potentially bearing any pain for him. Although they repeatedly stated that the hospital supports all decisions, they made it clear that their stance was unanimously for preventing a life of suffering without any quality of life.
The doctors at the meeting (two neonatologists, the neurologist and the nefrologist) and Neonatal ICU's social worker were all in consensus about his prognosis. They had also discussed Lachlan with many of the the other neonatologists working at the hospital, who had also agreed. The MRI showed Lachlan's brain damage to be comprehensive and extremely severe. It affected all parts of his brain, there was literally nothing undamaged. It was so pervasive and severe that there was no chance or hope of the brain successfully rewiring or recovering in any way. And the damage would get worse at least over the immediate future.
His motor functions would be severely impaired by large amounts of bleeding and a clot in his ventricles. This would bring about severe cerebral palsy: he would not be able to move. He would not be able to swallow. The clot would get larger, causing further damage, and would not go away by itself due to its size. It would cause him pain due to swelling. To drain fluid buildup from his ventricle, he would need multiple brain surgeries as he grew. These surgeries would be necessary to reduce his pain, and also to give him a chance for survival.
Lachlan's cortex had been devastated and experienced massive bleeding. Like his motor control, this meant that his intellectual facilities were severely impacted for life. He wouldn't develop learning abilities. It wasn't that he would develop slowly. He wouldn't ever be able to recognize us, smile, or reason. Due to the location of one massive amount of bleeding, it was also unlikely that he'd ever be able to see. The responses the neurologist saw in his eyes were likely reflexive from the brain stem and not from his visual processing center.
The doctors were in consensus that Lachlan would have a "very very poor outcome" and that he would have "no quality of life", due to the extent of his brain damage. After the ultrasound but before the meeting we thought that Lachlan would be quite impaired, but he could enjoy a sunny day, a visit to the park, or attention from our pet cat. We had come to terms with such an outlook for Lachlan. The news from the MRI was devastating.
They also said that Lachlan would lead a life of suffering.
Lachlan stopped urinated by himself which worried the doctors. He had to be catheterized again, and the nefrologist said that as he aged he would have to be catheterized frequently to empty his bladder. Otherwise he would develop painful and life threatening bladder infections (even if his bladder was emptied late just once).
His cerebral palsy would cause painful stiffness, which could be mitigated with drugs. However these have their own side-effects and are not perfect. More seriously, Lachlan would suffer from recurrent pneumonia. Infections could take hold in a very very short period of time. This reduced his life expectancy and also would bring great suffering to him.
While his kidneys appeared to be improving, they would remain severely impaired. Subsequent infections (e.g. pneumonia/bladder) would deliver further punishment. Before the family meeting, we thought that if they did shutdown, there could be a chance for transplant because his other organs seemed to be slowly coming back. The nefrologist said that with his extensive brain damage he would never be considered for transplant, so a life-time of dialysis could be waiting for him. She said that it "would be cruel" to him, and that they would recommend against dialysis.
Lachlan would develop severe epilepsy. Seizures would continue into adulthood but grow painful for him to bear.
Having any one of these conditions alone would not be issue enough to form a family meeting. But taken together these conditions meant that Lachlan would suffer with certainty.
At the end of the meeting the doctors said that we had to make a choice about whether to maintain Lachlan's life support. We could cease support to spare our son a painful life with quantity but without quality. Or we could continue supporting Lachlan until technology was not able to maintain him any longer. The doctors were clear about the prognosis described above as being almost certain. They said that his damage meant that short of a miracle, his life would unfold as they had discussed. Also, the doctors' discussion was objective and focussed only on Lachlan's interests. They did not consider our role as guardians and care givers.
This is the decision that no parent should have to make. It is our responsibility as parents to make it for our son. Our great love for Lachlan would lead us to making the decision as best as we could, with what we think he would want, potentially bearing any pain for him. Although they repeatedly stated that the hospital supports all decisions, they made it clear that their stance was unanimously for preventing a life of suffering without any quality of life.
Wednesday, April 22, 2009
Photos of a new Lachlan
We've uploaded an album to Google Picasa. Here's the link. Above are some of favorites.
Update 1 (5/15/2009 1:51AM PST): Here's a second album and a third.
Grandparents
Lachlan's grandparents are coming this week.
Michael and Diane (Juliet's parents) are flying over from Sydney
arriving 11am today Wed and staying for 3 and 6 weeks respectively.
They'll stay in our new 2nd bedroom (we moved to a 2 bedroom in
Lafayette Feb). They work at the commonwealth bank and immigration
respectively and are taking a lot of time off work for Lachlan which
is so nice.
Hyam and Sue (my parents) are arriving from Melb Fri morning. Dad is
staying for about 10 days. He is teaching a course at UMelb math. Mum
is staying for a little longer. They will be coming and going from
June when Lachlan was due, until around Aug when Dad starts sabbatical
at Davis (1 hour from here), ending in Dec. They'll stay in Lafayette
and dad will commute 1-2 times a week. We're going to investigate a 1
bedroom in our complex for them. Initially they'll stay at the holiday
inn express in Walnut Creek.
All of friends and colleagues in Berkeley, cousins in Petaluma, and
Australian friends and family have shown an immense amount of love and
support. We really appreciate all the kind messages and offers of help.
Extensive damage: particularly to brain and kidneys
The initial insult caused massive oxygen deprivation to all of Lachlan's organs: lungs, heart, kidneys, liver, gut, and brain. Unfortunately this badly damaged most of them, far beyond what you would normally see for a premature baby.
His lungs were initially doing poorly and like any premature baby delivered without steroids in an emergency, needed artificial surfactant to stay open. Four days later he is still on a mechanical ventilator, although it looks like he won't have to stay on it. He is taking many breaths on his own and is often down to atmospheric oxygen concentration.
We don't know a lot about his gut and liver. The later isn't doing it's job but the doctors don't seem too concerned. He won't be fed by mouth for at least a week because they figure he wouldn't be able to process the food yet. They are freezing Juliet's milk for when he's able to eat it.
Fortunately his heart appears to be normal.
In general his levels need a lot of balancing. He gets sugar, calcium, potassium, lipids and other basic compounds intravenously. For a while they were very concerned about his blood pH which was too high and causing cell damage. His kidneys are very bloated and doing very very poorly. There's a chance that they won't make it, but we recently heard the specialist is now cautiously optimistic for which we are very glad. If they don't pull through he would be on dialysis for a least a year until he could possibly get a transplant. He would only be considered for one if he
didn't have multiple organ failure. We're not yet certain if that would be the case.
Low clotting factors, hemoglobin, etc. have lead to numerous, repeated blood, platelet and plasma transfusions. These and the other fluids have left him very bloated as his non-functioning kidneys and liver have left him holding fluid. This in turn means they cannot give him as many fluids and transfusions as he needs. He has started peeing so we're optimistic that he'll void the excess fluids. It's a step by step process whereby a small improvement in one area allows treatment of another.
Unfortunately the much needed transfusions had another adverse (but expected for cases like Lachlan's) effect. After blood loss and partial brain shutdown, a new influx of blood causes an infant's brain to fire uncontrollably in the form of seizures. In themselves seizures aren't bad. However the uncontrolled, rhythmical firings increase in size and damage the brain. Frequent and severe seizures can cause serious brain damage. Lachlan was showing signs of seizures at Alta Bates: raised heart rate, lowered oxygen intake, lip smacking and posturing (a certain stretching of arms and legs). Baby seizures are much more subtle to spot than adult seizures. They gave him an EEG Fri afternoon which showed no seizure. However repeated suspect behavior lead them to transfer him to the Oakland Childrens' Hospital neonatal ICU Sat, where he is now. There they have neurologists with experience with babies. They have run EEGs on Lachlan almost everyday. With anti-seizure medicine which knocks him out, they seem to have his seizures under control. This should be protecting his brain from damage from seizures.
An ultrasound on his brain Mon showed recent bleeding (after his transfusions). It seemed localized, although they found a blood clot in one of his brain's ventricles. Pressure buildup from blocked fluid making it's way to his spine will cause the ventricle to dilate, forcing the surrounding brain tissue in turn to atrophy. This news was heartbreaking: an earlier ultrasound of Lachlan's brain showed no bleeding (we now realize there was no blood to bleed, but the damage was probably there) and the seizure treatments seemed to be working. We were encouraged by the possibility of surgery to alleviate the problem however. Treatment would relieve the pressure with a catheter or shunting the clot to his abdomen for reabsorption.
An MRI was scheduled for Tue morning; EEGs and ultrasounds of babies' brains only show one picture each. The former is restricted to seeing damage to lower order brain function. We felt optimistic that the MRI wouldn't show too much more brain damage.
The preliminary MRI results are bad. Bleeding has happened all over his brain (not detected by ultrasound) and there is a lot of swelling, much like what we see externally due to his fluid retention. The neonatologist said his brain has suffered "quite extensive damage". We will find out more, including a better idea about his prognosis and treament (if any) tomorrow in a "family meeting" with the neurologist, neonatalogist and social worker 3pm today Wed.
Insult
We now know what caused Lachlan's change in status but not why it
happened.
happened.
The placenta grows in the uterus alongside a fetus. It takes blood
from mother and transfers nourishment to fetus. It also takes waste
from the fetus. For some unknown reason Lachlan bled out through the
placenta into Juliet.
This was the initial 'insult' that seems to have caused so much damage
to Lachlan, and lead to the symptoms that eventually convinced the
hospital staff to remove him.
His body went without blood for some time. Under such conditions the
body prioritizes the brain then heart. Organs such as kidney, liver go
first.
We have now learned that an estimated 40ml of Lachlan's blood was
present in Juliet's bloodstream based on just one sample. This is
already a significant amount and there was possibly even more. Lachlan
was born pale white.
So far no one knows why this happened. Perhaps some kind of pressure
difference. Genetics seems unlikely and the cord seemed to be working.
Juliet's placenta did not abrupt and a standard 20 ultrasound showed
the cord in the correct place on the placenta. We have been told that
we did not cause this to happen and also that it is very rare: one
doctor said she had seen it only 6 times in her long career at Alta
Bates.
On one hand what's happened has happened. But we would like to better
understand why. It's possible that we never will.
Tuesday, April 21, 2009
Birth
Juliet's pregnancy was uneventful. All scans and screenings checked out. Lachlan's birth was far from uneventful, and far from "just" premature.
Lachlan had always been an active baby in utero. Thu April 16, in Lachlan's 32nd week (he was due June 12), Juliet noticed decreased fetal movement, a worrying but not terrible sign. Listening to her body, she observed from 10pm to midnight exactly zero kicks. According to some, a healthy fetus should be kicking at least 10 times per hour. So we called our obstetrician who ordered us to the hospital's labor & delivery dept.
We arrived at Alta Bates around 12:30am Fri April 17. We waited at labor & delivery triage. Still no kicks. Lachlan's heart rate was a healthy 130bpm or so. At around 4am we had an ultrasound with poor results: a 4 out of 8. There was blood flowing in the umbilical cord, his heart was beating fine. But he wasn't moving, not even practice breathing (the process by which the fetus tones the lungs in preparation for breathing). We returned to the triage room where cold juice and water didn't work either. Heart rate was still strong. Our OB was called but he didn't come yet, we mostly talked to nurses.
We were moved to a delivery room (which I was slightly suspicious about, but welcomed the nurses taking the matter more seriously) close to 7am. Fairly quickly Lachlan's heart beat began falling. First to around 90bpm. At this point the nurse was trying to move Juliet's position to get his rate back up. Then it fell to something like 60bpm and the nurses moved faster, giving Juliet oxygen, medication, a drip for hydration and getting her on all fours with the bed tilting her head down to improve Lachlan's heart rate. No improvement. More people quickly entered the room, including a doctor who immediately said something like "No time, we have to do an emergency C section".
We were both extremely scared at this point. I asked the doctor "why? do we have to?" And he said we had to, in order to save Lachlan. They couldn't do anything for him inside Juliet.
Around 7am they whisked Juliet's gurney down the hallway with me running behind. I suited up but was instructed to wait for the all clear to come into the operating room. There was no time, they said. They had to give her a general and remove Lachlan immediately. Within less than 10min he was out, on a bed with a ventilator. It was around now when our OB arrived. I followed Lachlan, with two nurses and a neonatologist in tow.
Lachlan was very pale. Initially I thought that was good: he looked like how a baby looks. But newborns should be red/pink/purple in color. I soon found out that this was a very bad sign.
Lachlan had always been an active baby in utero. Thu April 16, in Lachlan's 32nd week (he was due June 12), Juliet noticed decreased fetal movement, a worrying but not terrible sign. Listening to her body, she observed from 10pm to midnight exactly zero kicks. According to some, a healthy fetus should be kicking at least 10 times per hour. So we called our obstetrician who ordered us to the hospital's labor & delivery dept.
We arrived at Alta Bates around 12:30am Fri April 17. We waited at labor & delivery triage. Still no kicks. Lachlan's heart rate was a healthy 130bpm or so. At around 4am we had an ultrasound with poor results: a 4 out of 8. There was blood flowing in the umbilical cord, his heart was beating fine. But he wasn't moving, not even practice breathing (the process by which the fetus tones the lungs in preparation for breathing). We returned to the triage room where cold juice and water didn't work either. Heart rate was still strong. Our OB was called but he didn't come yet, we mostly talked to nurses.
We were moved to a delivery room (which I was slightly suspicious about, but welcomed the nurses taking the matter more seriously) close to 7am. Fairly quickly Lachlan's heart beat began falling. First to around 90bpm. At this point the nurse was trying to move Juliet's position to get his rate back up. Then it fell to something like 60bpm and the nurses moved faster, giving Juliet oxygen, medication, a drip for hydration and getting her on all fours with the bed tilting her head down to improve Lachlan's heart rate. No improvement. More people quickly entered the room, including a doctor who immediately said something like "No time, we have to do an emergency C section".
We were both extremely scared at this point. I asked the doctor "why? do we have to?" And he said we had to, in order to save Lachlan. They couldn't do anything for him inside Juliet.
Around 7am they whisked Juliet's gurney down the hallway with me running behind. I suited up but was instructed to wait for the all clear to come into the operating room. There was no time, they said. They had to give her a general and remove Lachlan immediately. Within less than 10min he was out, on a bed with a ventilator. It was around now when our OB arrived. I followed Lachlan, with two nurses and a neonatologist in tow.
Lachlan was very pale. Initially I thought that was good: he looked like how a baby looks. But newborns should be red/pink/purple in color. I soon found out that this was a very bad sign.
Monday, April 20, 2009
Welcome, Lachlan!
Baby Lachlan Mark Harry Rubinstein was born April 17 at 7:19am in Alta Bates Hospital, Berkeley to his mum Juliet and dad Ben. He was 2 months premature, but weighed in at 4 pounds 9 ounces (2090g). Welcome, baby!
We started this blog to communicate Lachlan's progress to our friends and family. His birth and the days after, have been both the happiest and saddest days either of us have experienced. It has been hard to share the full details: it has been hard logistically to respond to everyone individually, and also emotionally difficult to open up. We hope this blog will be useful in keeping friends and family updated, and also will be therapeutically helpful for us.
You can read the blog from its website, or subscribe to its feed with a blog reader. Private messages are always welcome (all of those received have been read and greatly greatly appreciated, even if we have not had time to reply).
Update 1 (4/25/2009 5:37PM PST): "Lachlan" is pronounced "Lock-len". The name is of Gaelic/Scottish origins. It means "from the land of lakes" referring to people of Viking descent. It is a warrior name. We chose this name, because we felt it was a cute baby name and also a strong name for a grown man; also it is a popular baby name in Australia (#1 in 2008 and top-10 in 2007). Mark Rutherford was Juliet's uncle, who tragically died at age 19 driving to Juliet's baptism. By all accounts he was a beautiful person. Harry Bernshaw was Ben's maternal grandfather. He was a general practitioner, husband to Bella and father to Sue, David, Judi and Naomi.
We started this blog to communicate Lachlan's progress to our friends and family. His birth and the days after, have been both the happiest and saddest days either of us have experienced. It has been hard to share the full details: it has been hard logistically to respond to everyone individually, and also emotionally difficult to open up. We hope this blog will be useful in keeping friends and family updated, and also will be therapeutically helpful for us.
You can read the blog from its website, or subscribe to its feed with a blog reader. Private messages are always welcome (all of those received have been read and greatly greatly appreciated, even if we have not had time to reply).
Update 1 (4/25/2009 5:37PM PST): "Lachlan" is pronounced "Lock-len". The name is of Gaelic/Scottish origins. It means "from the land of lakes" referring to people of Viking descent. It is a warrior name. We chose this name, because we felt it was a cute baby name and also a strong name for a grown man; also it is a popular baby name in Australia (#1 in 2008 and top-10 in 2007). Mark Rutherford was Juliet's uncle, who tragically died at age 19 driving to Juliet's baptism. By all accounts he was a beautiful person. Harry Bernshaw was Ben's maternal grandfather. He was a general practitioner, husband to Bella and father to Sue, David, Judi and Naomi.
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