Nicu Care And Switching Hospitals

[Monkey Fish]

Hello,

My son was born prematurely (35 weeks) ten days ago with breathing complications. After a couple days of oxygen, antibiotics, and observation at the private hospital in Roi Et where he was born, he was transfered to the NICU at the government hospital where he is now. I would say they have done a very good job; he was giving surfactants for respitory distress, and is on his third course of antibiotics for pneumonia (initial diagnoses differed) which was clearing as of the last x-ray four days ago. He was also treated for jaundice and has had a couple transfusions. He is now stable and taking mother's milk via feeding tube, but is still dependant on the ventilator for breathing. We're informed that some kids take months to learn to breath on their own after experiences like our son's.

On good days, like today, his color is good and he's active and sleeps well. On other days his color has been yellowish and he's much less energetic. On good days I feel like he's getting good care and I'm confident he will recover and be discharged. On bad days I feel like their not doing enough for him, not being proactive enough, and they're just leaving it up to him whether he's going to get better or not. Honestly, I have little evidence for my feelings on the bad days (they might be more my bad days than his bad days), but I'm also operating in something of an information vacuum, since I don't know how his treatment might differ if he was in one of the better (?) private hospital NICU's, like at Samitivej Sukhumvit.

I guess I'm writing this post for two reasons. First, I would like to hear from anybody with similar experiences and that feels like sharing them. Second, I'm wondering what my options are. If there is reason to, is moving him from Roi Et to Bangkok an option while he's ventilator dependant? The move between hospitals within Roi Et utilized manual ventilation, not an experience I care to repeat, let alone for a six hour drive.

Thank you.

PS. Yes, I am seeking this information elsewhere as well, even from the doctors that speak a strange version of Thai that consists entirely of euphemisms and ambiguities. But I would also like to benefit from the experiences of the ThaiVisa community. Thanks again.

[BuddhistDruid]

I am so very sorry to hear about your son.

I hope everything is OK. I have twins on the way, currently at 27 weeks, and live in fear they will come early. From whitepapers I have read for Siriraj and Thammasat, the NICU at these 2 Thai government hospitals have approximately the same survival rate as those from private hospitals here and in the West after the child reaches 32 weeks. I would say you can expect similar results from any government hospital associated with a university. It is difficult to get information about government hospitals not associated with a university, as they generally do not publish their results.

I understand your desire to do all you can as a parent. I have investigated the NICU charges at Bumrungrad in Bangkok. I was told to budget 30,000 baht per day. Samitivej will be similar, possibly slightly more expensive. This is so far beyond my capabilities that it is impossible, but your situation may be different.

I wish I could offer you more information, but I simply do not have it myself. You have a difficult choice to make. Spending more money for a private hospital does not necessarily increase the quality of care you will receive, but it can help with your psychological frame of mind. It will certainly increase the level of interaction you will have with the care givers (and more information may help to calm your nerves), and depending on your financial capability that may be worth it to you.

I would suggest googling for whitepapers by Thai university hospitals near you using the term VLBW and ELBW. (Very low birth weight, Extremely low birth weight). These two terms don't really appear in the literature except where there is discussion about premature delivery.

You may want to consider the hospital at Khon Kaen University rather than Bangkok. It's alot closer to you, and you should be able to find professors there capable of addressing your concerns in English. They almost always have a clinic outside the hospital where you can pay extra to talk with them.

Please let us know anything you learn. Your insights will be valuable to the rest of us who live in fear of similar problems.

[seadoo]

Our daughter was born at 32 weeks and my wife was medi-vac to Bummungrad, the team that worked on her was lead by Dr. Oridee the main professor in neo natal icu in Thailand, after 5 weeks nicu our daughter left and we owe her life to this wonderful doctor..

Fantastic team, fantastic support and facilities.

BTW, we did not have insurance to cover this type of problem and the hospital did not worry, treated her first and then days later they cut the bill dramatically and allowed us to pay over time if we wanted.

Edited May 15, 2010 by seadoo

[Monkey Fish]

Thanks for all the feedback. Our son has stabilized and now it looks like we're just talking about weaning him off the ventilator, so not thinking so seriously about moving him.

[Monkey Fish]

After three failed attempts to wean my son from the ventilator, I decided that the government hospital was at the limit of its skills and resources. My son was still in stable condition, but it seemed like the doctor was just going to leave it up to my son to improve or not. Given that the longer the child is in the hospital, the greater the chance of picking up some new problems, I had had enough.

In answer to my own question regarding transferring a NICU-baby from elsewhere to Bangkok, both Bumrungrad and Samitivej (Srinakarin) offer appropriate transfer service: an ambulance with the right machines, a doctor and a nurse. The doctor flies out to the nearest hospital, the ambulance (which left earlier) picks the doctor up, they pick up the patient, and then return to Bangkok. My wife rode in the ambulance with them (in the front with the driver). Bumrungrad wanted 100K to get the ball rolling, Samitivej 200K. The actual cost of the transfer was 40K. I went with Samitivej for two reasons: they have the best reviews (and least bad reviews) of the two, and I paid them a visit and met the doctor that runs the NICU (and who went to pick up my son). I was impressed with the doctor's apparent competence, her communication skills, and the fact that the hospital had the equipment and specialists to (hopefully) properly treat any patient.

A week later, my son is much improved. The government hospital in Roi Et had treated the RDS and pneumonia, but they failed to diagnose or treat a heart problem*, patent ductus arteriosus (PDA). Fortunately, medication seems to have been enough to close the ductus arteriosus. With blood going where it's supposed to, his lungs were up to the job and the ventilator tube came out a few days ago. Yesterday was the first breast feeding since he was born. Another week of medication and observation and he should be coming home.

*Samitivej relied on a heart specialist and an echo-cardiogram to diagnose the PDA, but the NICU doctor already suspected it based on symptoms and by using a stethoscope. I find it very troublesome that the Roi Et doctor never even mentioned the possibility of PDA, which is a common NICU diagnosis.

I could vent for some time about our experience at the private hospital where my son was born (Roi-Et Thonburi Hospital). There are quite a few things that could be said about the quality of care to be found at the government hospital. That said, for all the things they didn't do, or did do and shouldn't have done, both of those places saved my son's life. But while we were there I saw other parents that weren't so lucky.

Money issues made this experience much harder. Choosing between the government hospital, which was free and where he seemed to be getting good care, and between a private hospital in Bangkok where one hears the best care is to be found, but at great cost, was agonizing. I obviously should have had insurance.

I'm not proud of the impression I make with this thread, but I'm writing just in case somebody else can learn from my experience. If you find yourself in a situation like mine, don't agonize over the decision like I did, just get you child to best hospital you can as soon as you can.

[BuddhistDruid]

I am so glad to hear your child is doing well.

The mother of my twins is currently confined to a government hospital at 30 wks. +4 days. She has severe preeclampsia and dilated 4cm. She is on terbutaline and confined to bed. The only good news is her blood pressure is stable and no symptoms of HELLP yet. It is statistically very unlikely we will make it past 32 weeks.

I am disturbed to hear of your problems at the government hospital. I have absolutely no resources to pay for a hospital like Bumrungrad or Samitivej. Making that choice is simply not a choice for me. I am probably staring at a minimum of 2 months of NICU care for 2 children.

Is there any advice you can offer for those of us who have no choice but to use the government hospitals? What can be done to minimize those issues? Obviously PDA turned out to be a serious problem for your child. There is about an 15.4% chance it will affect at least one of my children if they are born at 32 weeks. What equipment was necessary to diagnose the PDA problem? Was that equipment available at the government hospital? Is this an equipment problem or a competence problem?

Any advice you can give me may help save the lives of my son and daughter. I am struggling daily with this.

[Monkey Fish]

I don't mean to give the impression that the government hospital was that bad. It was a stressful time and it's easy to be critical. In this case, the government hospital was much, much better than the private hospital. And it's worth noting that they did correctly diagnose and treat my son's RDS and pneumonia.

The government hospital relied on x-rays to diagnose the RDS (ground-glass appearance in the lungs) and pneumonia. They also received lab reports on blood and cultures. But they didn't have an echo-cardiogram to take a closer look at the heart. Samitivej relied on the echo and a heart specialist to diagnose the PDA, but the NICU doctor already strongly suspected it based on what she could hear with a stethoscope. PDA is common enough in NICU's that it seems like even the government hospital has ways to address it, but I didn't know to ask (although it's still troubling they never mentioned it).

There are so many variables that it's hard to give advice, but here's the advice that would have helped me:

Don't stress any more than you must, it just stresses out those around you.

Don't worry about things that haven't happened yet, there's enough to worry about already.

Be patient with all of the hospital staff. It's stressful for you, but routine for them.

Be polite with everybody. (You never know who you're going to see again, or who is making decisions that may affect you.)

Be present, but give the staff space to do their job without worrying about you looking over their shoulder.

I was fortunate to have doctors and nurses that were very receptive to my questions, but it took a while to get them to understand that I actually wanted to know everything. Some of the nurses seemed to enjoy answering my questions and going over the charts and lab results, others seemed to think I was engaging in espionage and would just direct me to ask my questions of the doctor (who only made his rounds once in the morning). There were interns around, they were very inexperienced, but some of them were helpful.

More advice: have a dictionary handy. I speak some Thai, and they speak some English, but there's going to be a lot of new words in your vocab after some time in the hospital.

In addition to researching my son's medical conditions and treatments on the net, I found it very useful to google the actual make and model of machines (particularly the vital signs monitor and the ventilator) so that I could better understand his condition and elements of his treatment on my own. It took me a while to discover that "mechanical ventilation" was the search term I most needed to know.

Looking over the above, there's not a lot of proactive advice that helps in the treatment, and that's a fact of the situation. The worst part of it all was the powerlessness I felt. I asked many questions of the doctor, partly to get information, but also partly to suggest things. I doubt that it made any difference. Also, by being present and taking a strong interest, I hoped that the nurses would pay more attention to their patients. Again, probably not a significant difference.

I think I'm giving a negative impression, but that's me. In fact most of the staff seemed very competent and were kind and accommodating. If it weren't for the PDA, my son would probably have already been discharged and I'd be singing their praises.

Edited May 30, 2010 by Monkey Fish

[Monkey Fish]

A little follow-up for anybody that happens to read this thread. My son is doing fine and starting to fatten up now that he's at home and can eat his fill.

The final tab at Samitivej Srinakarin was 350,000. Minus 40K for the transfer, that's 310K for two weeks, about 22K a day. Fyi, when I first called them and they didn't know me or my son from Adam, the gave a ballpark estimate of 20K-80K per day in the NICU. If I could extract the information from the bill, I'm sure the first days when specialists were in and out all day were very expensive, and then costs tapered as he responded to treatment.

- BuddhistDruid - I hope everything is going well with your family.

[seadoo]

Absolutely fantastic to hear all is going well.

Our family knows first hand what you were going through.

Money aside, your child must be making you proud.

[BuddhistDruid]

- BuddhistDruid - I hope everything is going well with your family.

Thank you for your good wishes. I am also extremely glad to hear everything worked out well for you. Our twins were born last Monday at 32 weeks. They are 1 week old today. No major health problems at all. They were both on CPAP for 1 day and then taken off entirely. My daughter had jaundice on day 3, but 48 hours in the tanning salon and she was back to her usual colour of wrinkled pink. They sailed through the NICU and are now in the normal nursery with everyone else. My daughter in particular (1.53kg at birth) is very small but healthy. My son looks almost like some of the other small full term children at 1.95kg.

They just have to learn how to suck and swallow, and we will be allowed to take them home. The nurses can not give me an estimate of when that will be, but they say it normally develops somewhere between 34 - 36 weeks in a full term infant, and the stress of being delivered preterm usually accelerates the process.

In a stroke of good fortune we were released from Thammasat where the mother was being treated for preeclampsia, and just 36 hours later went into labour. The discharge from the hospital allowed us to relocate to Chulalongkorn for the birth, where no bullets were flying around this time. The staff at Chulalongkorn are extremely helpful. Night and day compared to Thammasat where we were before.  

The only problem with Chulalongkorn is their absolutely militant policy of not being allowed to take pictures or videos of the children. I have tried endlessly to get someone to explain the reasoning behind this and whether there is anyway to get around the policy, but it has been hopeless. They are adamant that snapping a picture is a crime of the highest order, and they will immediately draw and quarter any overzealous dad who is caught violating this very important law. I will admit I did surreptitiously hit the button on my camera phone (completely by accident of course) when the nurses weren't looking. I'd like to get a better quality photo though with a real camera, but it just doesn't seem like this will be possible.

For anyone who is interested, The NICU charges at Chulalongkorn are about 2300 baht per bed per day plus whatever specialized services are required. In our case the first day's services turned out to be about 6000 baht each, but the remaining week there was almost nothing required other than the kids taking a nap after their rather stressful entry into the world.  My daughter had 2 instances of apnea that were quickly resolved by the nursing staff (and, of course, the jaundice) but that was it. The children are now on the government gold card plan and all further medical services are free of charge.  We did have to leave a 2000 baht per child cash deposit with the hospital for any personal items or medications that are not covered by the government, and we are required to buy Pampers for them periodically from the nursing station at the front. We also have to bring them breast milk daily that we express with a pump. We don't currently have enough to feed them entirely, so the nurses are having to supplement with formula. 

I have to say I worried and stressed about this but it all seems to have worked out. I am still extremely jealous of those who get to enjoy uneventful births without complications that go full term, but I am nevertheless aware of how lucky I have been. The results could have been much, much worse.