Advice for Hospital

iwould definately choose childrens hospital over nemc.childrens has a great team of doctors and is oneo f the best hospitals in boston.

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D.-

A little history: I went into labor with our second child at 29 weeks and they were able to stop the labor for another 29 days and during that time I was at NEMC on bed rest. I can not say enough about the team at NEMC. Our son was born at 33 weeks and they heard a murmur right away and found that he had VSD. During an echo 6 weeks later they found a pulmonary stenosis and their game plan was to see him in three months. I did not like this so I contacted a Pediatric Cardiologist at Childrens that I knew when I was younger and faxed over the report and we ended up seeing her one week later. We decided at that point to switch his care over to Children's. We have full faith in the doctors at NEMC but when you have access to Children's for such major stuff why not use the best. We have been very happy with the care our son is receiving. At this stage he does not need surgery but he is watched very closely. I would be happy to discuss with you further at any time.

S. B.
Mom to a 30 month old and a 9 month old.

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I'm so sorry you and your baby are in this situation! My second son has some heart problems that they discovered after he was born. My first advice is - get a second opinion (and a 3rd or 4th) so you feel comfortable that surgery is the best option for you- and also what method of surgery. The first pediatric cardiologist we saw said he definitely needed surgery, so we went to another who said he did not need surgery and then we went to a tie breaker who said it would be harmful to him if he had surgery. The third opinion happened to be at Boston Children's. He is almost 5 and is being monitored twice a year now and still no surgery. He is healthy and active. We love Boston Children's and would have traveled there from where we lived in DC if he had to have the surgery.

The second piece of advice is - go somewhere where the surgery is something they do lots and lots. Because the more often they do the surgery the better they are at it. Don't be afraid to ask questions like mortality rates, how often they perform the surgery a week, etc. They should be open to these questions and to the fact that you want other opinions. Because you know if it were their baby they'd do the same.

The third is trust your instinct. You are the mother and want the best for your baby, whatever that is. Good luck.

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I have a friend who had a similar situation and her daughter needed a couple of surgeries after birth (she is now thriving at 2!). She couldn't say enough about Children's and how they managed it. My recommendation would be Children's since I do think they have absolutely wonderful surgeons there (I am sure they do at NEMC too.

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Hi D.,
A very close friend of mine from college gave birth to a boy that had a hole in his heart & ended up needing a heart transplant. They live in Syracuse, NY & considered going to a hospital closer to their home, but decided on Children's given their reputation & expertise. I went to visit him on several occasions while he was in the hospital & the care he received was top notch. They also have fabulous accommodations for parents. I know it may be difficult leaving the docs & specialists that you have a relationship with at NEMC, but you may sleep better knowing that your child is in one the best hospitals in the country, if not the world. Best of luck to you & your family.
-R.

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Hi D.. My father is a pediatrician in the Boston area. He always sends his patients to specialists at Children's Hospital. However, before making your decision, I would research the surgeons at both places and ask around to find out more about his/her reputation. I hope the rest of your pregnancy goes well and wish you luck in your search for the best surgeon. -J.

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Children's Hospital hands down...boston has the best doctor's in the country...I wouldn't even give it a second thought! good luck

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Go to Boston! Children's really is the best care out there for children and that's exaclty what you need with open heart surgery. It's not as if it is a small procedure, so you really need the best. My friend's son had open heart surgery there at 6 days old. Good luck, I'll be thinking of you..

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I would most certainly go to Children's Boston.

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I defienitely think you should go to Children's, or see i fyou can do an online search to find out the top ranked pediattric heart hospital in boston- ! good luck, but have faith in the amazing boston hospitals at your fingertips!

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So sorry to hear that you're going through this. Boston certainly is the best place to be in terms of medical care. I had wonderful experiences at NEMC -- I was a high risk pregnancy and had wonderful care there. The team in the maternal/fetal medicine department were warm, caring and I just can't say enough about them. I've also had family members who have had care at Children's and they're also wonderful. Go with your gut!!

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I am very sorry to here about your child... When my son was born, 15 hours after his birth (at Women and Infants in RI) they took him to Boston's Children Hospital... He had open heart surgery at six days old... I am thankful for them... They saved my son... Who is now four and very active. When I was there, there was a guy who was from Alabama with his child who was having open heart surgery... BCH is one of the best for open heart surgery... If you have any questions or just need to talk please feel free to email me...

You will be in my prayers...
M.

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I highly recommend that you take your care to the Brigham which is connected to Children's Hospital. I am a pediatric nurse and I know that your child will get the best Cardiac Surgery care there! You probably want to be near your child in case they need extra care after delivery. I would transfer to Brigham if I were in your boat. I hope things go well!

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My niece had two septal defects (ASD, VSD) that were also found in utero. She had them repaired at 7 months at Childrens in Boston. My family was extremely happy with the care she received and she is now a thriving 6 year old. I am sure NEMC is a fine hospital but Childrens is the absolute best. Good luck to you and your family.

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I am unfamiliar with NEMC. My daughter was born in Florida with a large VSD. It developed a sub-aortic membrane and required surgery when she was 5. Her Cardiologist practices with CHAD out of Manchester but he's not a surgeon and so we went to Children's. I had 3 children at the time. Gabrielle stayed in the hospital with Daddy, Joe 3 stayed with my brother and Louis traveled with me from my brothers to the hospital. There was plenty of room for the the pack and play to be set up in the room. She was there for 4 days and it was the best care we could have asked for. They were caring and understanding of what discomforts she would have and tried their best to make her fell better. I would definitely recommend Children's. If you trust the surgeon she is seeing then stay where you are. Otherwise go to Children's and talk to a surgeon there for a second opinion. All the est of luck to you, your daughter and family,
D. C mom of Gabrielle 15, Joseph 13, Louis 11 and Harrison 7

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I don't know anything about NEMC, but Children's Hospital in Boston is one of the top rated hospitals if not the top rated for children, in the country.
Good luck! I know this must be a very trying time for you.

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My family has had great success at Childrens Hospital. It is one of the best Childrens Hospitals in the country.My little cousin is going there for a rare syndrome and has surgery this week. Also another cousin has gone there for years and had nothing but great care.A close frinds son had to have several heart surgerys and they chose the same hospital and were very pleased with the knowledge and help they received. I dont know if this helps but if you have the option Childrens Hospital is the way to go.Good luck with everything and know there are others you will meet there that can be a strong support network for you.

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Children's Hospital in Boston is one of the world's leading hospitals for newborn cardiac care. A friend's newborn is there now and they have had a wonderful experience...considering what they've had to go through. Families from around the world travel to bring their kids to that hospital...so its probably the one to go to.
Good luck with everything!

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Oh I am so sorry you have to go through this. My son is followed at NEMC same thing as the floating hospital I believe. He was not in the cardiac unit though. He has a mass in his abdominal wall which is benign but needs to be followed. My younger son had a cyst removed recently from his head and that was done at children's. That is the hospital that I chose because his issue was a little more complex and I felt 100% confident that he was in the best hands. Both hospital were great but anything that is cardiac related I personally would choose children's. I feel that it is the best but that is just my opinion. I have a friend who works there (children's) as a nurse in the cardiac unit. If you have any questions I would be happy to ask her for you. Which ever you choose they are both GREAT hospitals.
Take care and I wish you luck! P.

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So sorry to hear about your baby needing surgery. I have never been to Children's, but am very familiar with NEMC. Our son was born premature (1 pound 11 oz.) and we spent 3 1/2 months in the NICU at NEMC. They are wonderful doctors and nurses......we still keep in touch with some of them. Our son is now 5 years old. While spending time in the NICU, we saw many babies needing heart surgery for PDA's and they all did great. The NICU nurses could not have been better to us, they really cared.

Our daughter is now a patient at NEMC, recently diagnosed with juvenile diabetes......and we are really happy there.

I had two c-sections at NEMC and the nurses on the Labor and Delivery floor were great too.

Good luck and our prayers are with you!

S.

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My daughter had surgery at Boston Children's Hospital when she was 2. She required ear tubes due to frequent ear infections and hearing difficulties. I can not stress enough how wonderful the nurses and all the people we encountered were. From the time we arrived until the time we left the hospital. Everyone was so caring not only to my daughter but to my husband & I as well. I would definitley recommend Boston Children's Hospital to anyone.

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Hi D., My daughter has had 5 surgeries all before she was 1 year old. All done at Childrens Hospital, Boston. She was born with cleft lip/palate and we found out at an ultrasound, so we were prepared. Childrens has been wonderful. I really felt at ease with them and they took great care of her. My husband stayed with her in the hospital (we have an older daughter) at night and they really made him comfortable and were very accomidating. I just feel that they specialize in Children's needs, and I would not take her anywhere else. The staff became almost like family, very caring.....I would highly recommend Children's Hospital. Good Luck, be strong. It is not easy to see a little one go through surgery or any proceedure for that matter. You will get through it and she will be fine.....A.

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My 15 year old daughter was born with down syndrome. She required heart surgery to close PDA when she was 4 months old. She received all her treatment at NEMC in Boston. At some point shortly after that, the cardiologists from NEMC actually moved to Children's. I'm not sure about the surgeons. I know her surgeon was Dr. Warner. The PDA surgery (although not really open heart surgery as the duct is on the outside of the heart) went smoothly, and I felt she received the very best of care. I am sure that either hospital will be fine. I believe the doctors at both hospitals are in close contact with each other and are both skilled in the latest techniques. R.

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I don't have any recent experience with cardiology at Floating (NEMC), but I did have open heart surgery at Floating when I was a child to repair an atrial septal defect that I was born with. It's been 32+ years, and I have never had a problem. My son has seen other pediatric specilists at Floating, and I have always been completely satisfied with their service, care, compassion, and knowledge. I don't have any experience with Children's Hospital in Boston, but I am happy enough with Floating that I keep all my son's specialist appointments there.

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Go to Boston. My prayers are with you. There are no guarantees, but you will vastly increase your chances of a good outcome if you go to Children's. They also have an awesome feature called "carepages" that allows you to update all your friends and family via email. You can keep in touch without being bombarded by calls and visitors. I have a friend whose little boy was there for several months, and those of us who couldn't be there could just go online and see new pics and read all about his progress. Good luck!

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hi D.,
congrats on your little one! and i am sorry you are having to deal with open heart surgery right along side cute little diapers and toes. i know all too well what you must be going through as we have a now 9 month old little baby who had to have heart surgery at 6 days old, and open heart surgery at 6 months old. at our 20 wk ultrasound he was diagnosed with a condition called tetralogy of fallot. he is doing wonderfully now thank God. i can offer you much help and much knowledge. please feel free to email me directly at ____@____.com, and then perhaps we can set up a time to speak over the phone. the very first piece of advice i would give you though is deliver in boston and do the surgery AT CHILDRENS HOSPITAL OF BOSTON. they are amazing with congenital heart defects. don't worry that you are not from there. that is not what matters. getting your child the right care is what matters. these surgeries are VERY specialized and you need the right surgeon AND post op care facility and team to minimize the very real risks involved.

best to you and your family,
A.

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Hi D.,
I can first hand tell you that I recommend Children's. I had a ASD that was corrected through vascular surgery when i was 28 or so. Everything went well. I'm 20 weeks pregnant now and for precaution sake i am getting a fetal cardiac echo to look for that. I recommend Mike Landzberg, M.D. ... excellent beside manner and excellent doctor. K.

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I'm so sorry to hear that.
I used to work at Children's Hospital Boston and I can say they have the very best cardiac care anywhere. Definitely explore them--speak to the surgeons--they are some of the world's very best--and the patient care is outstanding. People literally come from around the world for the cardiac program. They also have excellent family support--support for learning all you can about the condition, the procedure and what to expect--check the Center for Families, also they have programs for siblings, they are just sooooo focused on children and families--the ENTIRE hospital. They will connect you with other families who have been through the same thing if you want that sort of support. There is just a lot to offer there.
Good luck,
N.

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D.
Sorry to hear about your new baby's condition. It must be hard to know that there is something wrong with her but not much to do about it until she comes out! That said- I have worked in and around major teaching hospitals for all of my career, and have had many doctor friends go through both Boston Childrens- there is no doubt in my mind that I would send my kids to Boston Childrens for any specialized care. It is THE BEST Childrens Hospital in the country. we are lucky to have it so close...

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I don't have any experience with NEMC but have dealt with Childrens since my 17yo was 3 and wouldn't go anywhere else with my children.

(Note: I have four ages 20, 17, 12 and 11 and am a former oster parent who has used Childrens for years.)

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I have a little experience with Children's Hospital in Boston and I cannot say enough how fantastic it was. When I was 24 weeks pregnant I was diagnosed with an umbilical varix...similar to an anyuerism, and with a high rate of late term pregnancy loss. We were completely in the dark because this is apparently a very rare condition and not even much research is available. We went to our local hospital (in CT) and felt we really needed to get some more info and medical opinions and options. We first went to Yale, and were not satisfied with the answers we were, or weren't, getting. I have a good friend who was a nurse at Mass General and she suggested Children's. We spent an entire day there and were treated as though we were the only case they had. We met with the most knowledegable surgeons, neo-natal pediatricians and had the most comprehensive testing done. We even met with one surgeon and they brought in a neo-natal physician's assistant to take notes for us so we would be able to just listen. We drove back to CT and got a phone call the next day to see if we had any other questions they hadn't answered! We got all the answers we were looking for and then some when Yale couldn't give us much of anything. My husband and I can't say how much comfort we took in knowing we were in such good hands. That is our personal experience, we have friends whose baby girl required a heart surgery immediately following her birth and they had it done at Children's. Their scary experience was only alleviated by the fact that their experience at Children's was so great. The doctors and nurses and staff were so supportive and sensitive, they too sing the praises of Children's hospital.
I hope this helps a little!! Best of luck to you!!

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personally - go to Boston.. they have the best teams there.. my daughter was in Children's for an appendectomy when she was 4. the surgeons are blunt and not very "warm and fuzzy", but they know their stuff! Not sure about the cardiology dept but I was able to sleep there for 5 days in a chair with my daughter (I was 36 weeks pg too!). You could always check into a Ronald McDonald house if you live too far to travel. Good luck, take care and I'm sure everything will be fine.

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Hi D.-
My neighbors 24 month old had av septal defect repaired at Children's when she was younger...while they had luck up until now, they have recently left Children's for numerous issues. If you'd like, I could hook you up with her for the details...Children's is not all it is cracked up to be, but a great hospital, no doubt. I would get numerous opinions!!

C.

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First and foremost, I am sorry to hear this news and my thoughts and prayers are with you and your family.

Children's is the best place on earth. Really, people come from all over the world to have their children treated there. That said, I would meet with a doc from NEMC and a doc from Children's and tour both facilities to see what makes you more comfortable.

Best wishes,

E

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D.
I am so sorry to hear of your troubles. My son had a problem with his penis when he was born and we were referred to NEMC for care. It is no way as bad as what you are going through but we had such a positive experience there. Good luck and God Bless.
Cynthia
Mom of daughter 6 and son 4.

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