Children's Hospital of Philadelphia.
My husband and I choose CHOP. It was 16 hour drive from our Iowa home. We had read that they were leading the reseach in CDH care. They had cared for about 25-30 CDH babies per year. We felt confident that they knew and understood CDH. We thought our local doctor didn't know as much and that made us very fearful.
I give them FIVE stars. The nursing staff was very experienced. They were right there for Ava and us when she was very critical. They were very skilled in 'gentle ventilation' and ECMO. When Ava was "out of the woods" so to speak I did feel they backed down a bit in her care. There were a few nurses my husband and I didn't jive with, but when we talked with the nursing manager things did change. We were very impressed with CHOP and their over-all care. CHOP was a total sucess. We never regret traveleing so far for her care. We know that she survived because of their experience and skill.
CHOP Doctor review.. My husband and I trusted Dr. Adzick with Ava's life. He was phenominal. He knew all the right things to do if she had a setback. He preformed her surgical diaphragmatic hernia repair on day 14 of Life. He was confident and very helpful in answering all of our questions. He was the Fetal Director at CHOP and had wrote many research papers. We loved Doctor Scott Adzick.
~Terri Helmick
CHOP Doctor Review..."Dr. Holly Hedrick. She was absolutely fantastic and had incredible bedside manners from the first consultation, moments after surgery, until the moment we went home and then again when we came back because of my daughters volvulous. She makes us feel so welcome when we go for follow ups and remembers us most importantly my daughter. She even has a specialty in which she creates a creative dressing to cover the CDH scar after surgery. My daughter developed the nickname rockstar and we ran with it. So much so that Dr. Hedrick made a guitar dressing for her scar. The whole CHOP hospital people and facility was amazing. My wife and I say it was like our North Pole this year."
~Joe Zdeb
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Cincinnati Children’s Hospital
We didn’t deliver here, but we were given the option. We had a full day’s worth of tests done here twice during my pregnancy. Both times I felt like a number and was ushered from one place to the next without any real direction. The team meeting was great. Doctors were nice and informative and really listened, but in practice the hospital felt very cold. The team also ‘pressured’ us to delivery there by saying our local hospital wouldn’t have a surgeon, which was ridiculous. I checked with them and they were going through changes, but were never going to be unstaffed.
Pros: Doctor team was very friendly and informative
Cons: Felt like a number, Was pressured to deliver here with false information, Never felt very welcome
St. Vincent Women’s of Indianapolis
LOVED this hospital. We delivered and had the majority of my pre-natal work done here. They always had a personal guide for us to get us to and from each location and were very helpful if we had any questions. The children’s hospital is across the street so I was able to visit my son while he was on ECMO. Had he not needed it, we would have been in the same building the entire time. The MFM office was great, and I loved each doctor. In the beginning they were very negative, but as time went on, they too became more positive about our outcome. Also, they have a financial aid service. We make too much to get help from Wic or any other government assistance, but not enough to afford some things. With their system we were able to get 70% off our bills after insurance.
Pros: Great financial assistance, very welcoming and helpful, NICU is in the same building,
Cons: ECMO is at a different building (but close enough to visit), Doctors were a little too negative for my taste in the beginning (but got better)
Hope that helps someone!
~Bonnie VanDeventer
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Children's Hospital of Milwaukee (WI)
We were referred to CHW and I couldn't be more thankful! We felt the entire team that took care of our son was very qualified and professional. The nurses were top notch ...and would help us understand the overload of information. They would advocate on our behalf on many occasions when we didn't understand procedures and made sure everyone was on the same page. The entire team worked together and we couldn't ask for a better experience.
I would rate them with five stars as well. Having so many re-herniation surgeries, we got to know many different levels of care and feel like we are spoiled there, but I know that's probably how they treat everyone. There have been a few "kinks" as far as communication along the way, but it always got addressed and taken care of.
Doctor Review: I would have to say that Elijah's surgeon, Dr. Oldham was the rock we often relied on when we thought things were never going to get better. He always saw the need or problem and had a way to fix it. As the surgeon-in-chief, we felt very blessed to have him for all of Elijah's major surgeries. I also have to acknowledge the Special Needs Department. They specialize in overseeing our son's overall needs and concerns and help direct us to the specialist who can best help. Dr. Gordon developed this department at CHW. Our nurse case manager for this department, Mary Krauthoefer, has been a God-send!
I am always willing to share with anyone who has been/will be involved with this hospital!
~Janel Litzner
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Shands Children's in Gainesville FL
The doctor was Dr. David Kays 2006.
Ease of getting appointment: Terrible, couldn't believe an office could give such a run around and not return calls. It took weeks. Almost had to beg.
Information given to us: None, only financial and insurance requirements.
Effort to reassure family and show caring about our fears: None
Dr's expertise: Beyond reproach
Dr's demeanor: Hot and cold, had to chase him to talk to him.
Outcome: Baby survived and is doing beautifully.He is now five years old.
* Comments:
Hospital staff showed contempt for him.
Heard staff describe him as an a** when talking to a friend on a line outside of hospital, then responded back into phone in response to friend's comment, "certifiably".
At one point on rounds he turned off our baby's ventilator to show the students that the baby would not breathe on his own without it...I stood watching in horror those long seconds waiting for him to turn it back on.
*Misc:
I found him by searching CDH on the computer. His name came up everywhere, he was THE best there was, had the highest survival stats. I was afraid to look elsewhere, there was no other hospital/doctor being touted. He was famous as developing the use of gentle ventilation and saving hundreds of babies. At a coffee stand I approached a med student I recognized. I commented on what an honor it must be to have Dr. Kays as a teacher. She just glared at me, didn't say a word, and then her instructor/leader of the group came up and gently said to me words to the effect "there will always be varying conflict and opinions among medical staff". The overriding opinion was that he had started to feel omnipotent. Bottom line, he saved our baby. If he was reckless in showing his "power" over the lives of these babies I only saw that one example. It has haunted me...
~Charlotte Hunt
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UF/Shands Hospital, Gainesville, FL/ Surgeon: Dr. David Kays
Treatment Dates: 12/25/2008-2/25/2009
I am from Marco Island, FL. I was diagnosed at 29 weeks and told that my baby girl most likely had right-sided CDH. After a night of research, I e-mailed Dr. Kays at UF/Shands Hospital in Gainesville, FL after reading wonderful accounts of his treatment principals and survival rate. I received a personal response from Dr. Kays within 2 hours of my e-mail (and I understand that this is typical from talking with other parents who had children treated by Dr. Kays). He said he could help and to contact his assistant to set up an appointment. I called and had an appointment for two weeks from them, at 31 weeks. I drove up 5 hours from my home and met with the OB there first, who gave me a detailed ultrasound and echocardiogram and drew a diagram and made notes for Dr. Kays, which I took directly with me to my appointment with him. The first thing he did was give myself and my husband a big hug and then sat down and spoke with us for 2 hours about what to expect and details on Dakota and what to expect with her treatment. He took us on a tour of the two NICUs and we got to speak with a mom whose baby was almost going home.
Thanks to the quick response from UF/Shands and Dr. Kays, I had everything set when Dakota came unexpectedly at my local hospital on Christmas Day, more than 7 weeks early! As I gave them the information, my local hospital called Dr. Kays (remember, this is Christmas Day) who talked them through the ventilator settings and then immediately sent a plane down from Shands Hospital, Shands Air, with two specialized NICU nurses. He kept in contact with the local hospital the whole time and put off his vacation which he always takes at Christmas time to get my baby in and settled. She started crashing on her second day, before I arrived in Gainesville, and Dr. Kays called me and asked for my consent to put my baby on ECMO. I later found out this breaks the normal rules since Dakota was not yet 34 weeks. However, she was 5 lbs 3 ounces and had a good LHR prior to birth, and Dr. Kays treats each baby based on that baby; he gave her a chance when very few hospitals would have and she stabilized immediately on ECMO. She was off ECMO by her 5th day of life and then had surgery on her 13th day. We spent a total of 60 days in the NICUs.
In our 60 days I had probably 20 different nurses, and everyone but one was exceptional. They were caring, detail-oriented, careful, attentive. They explained everything to me and in the early days Dr. Kays would also come by and give us detailed explanations and analysis. Given that he is the head of pediatric surgery, and the fact that he will not leave a crashing baby's side, he becomes, understandably, much harder to track down once we move to NICU II and are in the eating/trying to get home phase. I will always be grateful to the nurses and doctors at Shands and Dr. Kays. Dakota was not an easy case. He did not have to postpone his vacation, or send down a plane to pick my 7 week early CDH baby up on Christmas Day. There were two closer children's hospital with ECMO. But he did and my baby survived because of it.
~Jennifer Trafton
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Sacred Heart Medical Center in Spokane, WA
We entrusted our daughter Allison’s life in the hands of one Dr. Keith Georgeson at Sacred Heart
Medical Center in Spokane, WA. Sacred Heart was not initially where we planned to have our CDH girl when we learned of her condition because at the time they did not have an ECMO program. But, after several ultrasounds with very high LHR numbers and great growth, we were told that Allison would not be likely to require ECMO, and so we went ahead and planned for her birth to be there at Sacred Heart.We were assured that if for some reason she did require ECMO treatment, that she could be airlifted toSeattle immediately.
While Sacred Heart is not our closest local hospital, it is only an hour’s drive from where we live in
northern Idaho. A much easier commute for us to be able to be by our baby girl’s bedside during theserough times. After making the decision to go ahead with the birth at Sacred Heart we met our surgeon Dr. Georgeson. He knows everything there is to know about CDH, and we could not have asked for a better doctor. He was a founder in the nation’s Doctor’s CDH Research Study Group, and recentlymoved to Spokane to be closer to his grandchildren. He is considered one of the nation’s best pediatric surgeons. I would not argue with these claims for one second! How lucky are we that such an amazing surgeon with such an extensive CDH background moved to our small town! He did a Gortex patch repair that he lined both sides in live intestinal tissues so that it would truly become a part of Alli and grow with her to prevent reherniation.
During the surgery it was discovered that Allison’s condition was far worse than anyone expected. She was missing nearly her entire diaphragm and all of her stomach contents had moved into her chest only allowing for a nub of lung tissue to develop of the left and less than half the lung tissue required on the right. We were so lucky that she was able to fight the way she did and hang on until surgery without requiring ECMO. The NICU nurses completely rearranged their schedules so that Allison could have one- on-one care during her most critical stages and I could not be more grateful. They knew how special Allison was, and several asked if they could become her primary. We ended up with a really amazing primary nurse who it turned out actually cared for my younger micro-preemie cousin 20 years ago!
Though Allison falls into the category for most likely to reherniate, we have not had any issues, and she is almost 8 months old. After Dr. Georgeson’s amazing repair, the Sacred Heart staff’s fantastic gentle ventilation techniques, and some time to grow, Allison’s chest x-ray now looks like that of any other baby! Who knew that was even possible?! Since Allison’s birth, Dr. Georgeson has developed and trained for an ECMO program at Sacred Heart, so I would recommend them to any local parents that are expecting a CDH baby. They receive a big FIVE stars from us!
~Alexis Wood
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North Oaks Hospital Hammond, La
Let me start with where we delivered. I loved North Oaks! The ob clinic we went to has the sweetest midwives who always took the time to answer all of my questions and concerns. The hospital staff is top notch. They were the sweetest nurses I have ever met. When Adam was born we didn't know he had CDH so of course it took a little bit of time to figure out what was going on and getting him stable. That was probably the worst part. The neonatologist Dr. Viallta came in to tell us what was going on and took the time to explain everything thoroughly. We were understandable confused since we were in a bit of shock but I can't fault the hospital on that! The nursing staff kept me in the same room he was delivered in instead of moving me to a recovery room so that I could have some privacy and to help me deal with what was going on. Adam was life flighted to Ochsner.
Ochsner Hospital New Orleans, La
Since we were undiagnosed we didn't have much of a choice as to where we were going. The neonatologist at North Oaks worked under Dr Vincent Adolph at Ochsner Hospital in New Orleans and knew he does amazing work with CDH cases. Dr Adolph also happens to be a medical advisor for Cherubs! When I found that out (about 2 weeks later) I knew I was in good hands! The only problem I ever had at Ochsner I can't really fault them on. When I arrived the day after Adam was sent there I was bombarded with paperwork I didn't understand (you know consents, insurance, all that stuff) but I was still in shock and just signed away. It took a week for me to realize I had no idea what I signed so they let me look over it again. Ochsner took such great care of not only Adam but also Dana, Skylar, and I. When we found out that he needed ECMO they put us in the Brent House Hotel (a part of the hospital) so that we were close at all times, they provided food vouchers so we could eat for free, they even provided day care vouchers so we could visit him and let Skylar play. The nursing staff never left his side while he was at his most critical. During his more critical surgeries they closed the NICU instead of transporting him to surgery to put him at as little risk as possible. Ochsner was also my hospital of choice for Adam's heart surgery performed last January. His cardiologists Dr. Young and Dr. Lucas did a fantastic job and for the first time since his surgery we are seeing 100% O2 sats! I am thrilled to say that if I had too do it all over again not a thing would change! There is a special place in my heart for all of his doctors, nurses, and respiratory therapists! Thank you Ochsner!
~Lisa Thibeau
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Boston Children's Hospital
Boston children's hospital to that list! I would give them a 5 star rating! My son Jameson was born 12/6/11 with left sided congenital diaphragmatic hernia. It went undiagnosed throughout my entire pregnancy so imagine my horrified surprise when we discovered our son almost died when he was born. He was transfered from Rochester, N.H. where he was born by ambulance to Boston Massachusetts to their children's hospital. His pediatric surgeon was Dr. Bradley Linden. He repaired my sons hernia along with an A-list team of people to help. His surgery was about 3 hrs long. Everyone in the NICU there referred to Jameson as their "rockstar" because he spent a total of 9, yes NINE!! days at the children's hospital for his care. He was admitted on december 6th and was discharged and ready to come back home to N.H. on December 15th. It felt like an eternity to us because it was all completely new to us, we were not prepared and had never heard of CDH before. But they told us a 9 day stay is unheard of and that most babies spend at least a few months in the hospital for cdh.
~Katie Eaton
"Yay for Boston Children's!! 2007"
~Ana Pena
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Valley Childrens hospital in CA
They are awesome 5 stars and Liam's ped DR Coverston @ alta family in dining ca 5 star because he goes beyond duties to help Liam. I have his personal cell and he's made many house calls and late night text.
~Aubin Bryant
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Morgan Stanley Children's Hospital
"It is an AMAZING Place."
~Joanne KalesTrontz
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Omaha Children's
We had excellence care at Omaha Nebraska medical center! Dr Reynor was her surgeon and did a wonderful job, he explained things very clear to us of how she was doing and things she needed to improve on. The nurses were awesome I had a favorite we still have to go back for check ups often and Dr Reynor remember us and her well. She was born December 9th 2011 LCDH and was in NICU for 51 days. All I can say is thank you for our little angel!
~Corressa Benker
"We loved Omaha Children's, which is where we were. Dr. Raynor did our daughter's repair in 2005."
~Kristyn Mostek
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Sick Kids in Toronto
Doctor Review- Dr Peter Cox in PICU and Drs Himidan & Langer in surgery. Every person we encountered was amazing, straightforward, loving, honest, and caring. 10 out of 5 stars.
~Alex Wesson
"Sick kids in Toronto!!! Excellent hospital and true hospital of miracles."
Doctor Review... "Dr. Peter Cox, Dr. Hatchison and Dr Jacob Langer in CDH surgery. To Dr. Peter Dirks neurosurgeon in Surgery for Hydrocephalus. And of course every nurse who took care of my son 24/7 they are truly amazing, caring and very patient. I give a 10 as well out of 5 stars! Thank you to sick kids Toronto!"
~Esther Bensusan
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Iowa Children's Hospital
I have to be honest... Iowa Children's hospital needs some work. Their PICU has very good doctors but their nursing staff could use a little lesson on listening to parents. We had a very bad thing happen to our daughter while in their care. They didn't heed what was going on to Ava's entire body. Words of advise to all parents in any hospital be patient but when it comes to your child's needs, ask questions to understand the game plan. If something seems wrong speak loud and voice your concerns. You have the right to be your child's voice.
Doctor Review- Dr. Joel Shilyansky was AMAZING. When Ava reherniated in 2008 he did all he could to save her. He is very wise and knowledgable about CDH. The thing I love about this man is that he listens to every word I say and takes my thoughts into consideration. I owe him so much for all the surgeries he's done to help save and heal Ava. We are very grateful to him! Joshua Petersen was Ava's Nurse Practicianer and an all over great man. He also listened to me and always cared so much for Ava. I can't say enough good things about either of these guys. They truly cared!
~Terri Helmick
