Archive for January, 2009

Patrick’s story

January 2nd, 2009 by Christine

Feb07 baby Patrick was born 28 wks early due to placental abruption. While pregnant I was diagnosed with intrauterine growth restriction due to inefficient placenta of unknown causes. Got through the fear of all the unknowns with an emerg c section and a premie. Releived he was alive and well. Baby was placed in the NICU and on day two he was breathing on his own. He was doing remarkably well with no major problems other than Jaundice.

Everyday was a rollercoaster ride though. News was always good in the daily rounds. We finally began to lighten up and breath easier as we were told he would likely be discharged to a regular hospital nursery. His stay in the NICU was for the most part uneventful. Out of the blue, on day 18 his vitals were acting funny. Wasn’t tolerating his tube feeds of BM. Nurses were keeping an eye out but had nothing concrete to tell us.

Next, he was working harder to breathe and they put him on CPAP. They moved him back to one to one care stating they were just being cautious. I left my little Patrick around 8pm that night feeling uneasy and with no information on what was happening to him. I had so many questions with no answers. Recieved call from the Dr. early the next day stating he had Necrotizing enterocolitis. She sounded pretty casual. I went to hospital at 6 am and saw a very sickly baby with a distended tummy. He was not responsive at all. Dr. told us they were waiting for a surgery consult. Little did I know that he would die that morning.

My husband and I clutched onto each other at the bedside and watched the doctors and nurses work on him. Slowly we were moved farther away as things got very hectic. The speed and manner with which they worked became more and more intense as his condition worsened. More staff joined in and I knew it was grave as his vitals were deteriorating.

Finally the last attempt to save his life was Chest compressions. When I saw that I knew it was over. I have to say that was the most traumatic agonizing thing we have ever gone through. It has almost been 2 years and I still cannot beleive we lost our baby. Finally they gave him to me and I got to hold and kiss him freely. Still so many unanswered questions like WHY, WHY, WHY?

Louie’s story

January 2nd, 2009 by Emma Lowe

Writing this only 2 weeks after louies death is killing me but i need to write it down so maybe someone who knows what I’m going through can understand.

My beautiful son Louie was born on 23 november 2008 although 8 weeks early and weighing 2lb 14oz he was doing so well, breathing on his own within 4 hours, the first few days after Louie were a blur as i was ill.

I lost alot of blood due to a low lying placenta. I spent as much time with him a I could while i was in hospital. But I was let out on day 4 and has to leave louie on the neo natal unit. as I had had a cescarian I couldnt drive so had to wait for james to finish work and then only got to spend maybe 2 hours with him. On 29th november i went to the hospital before James and I remember texting james to say he wasn’t well and kept being sick, when james arrived Louie seemed ok we both had a cuddle and said goodnight. when I called the hospital that night they said Louie was fine and to get some sleep.

8 hours later i called to see how he was during the night. They said he had been unwell and to make our way to the hospital. I knew something bad was wrong. Mothers instincts or maybe history repeating itself i dont know but I went in to complete shock and panic. When I arrived at the hospital Louie had been intubated he looked so pale had no colour in his face and was not my little boy that I had left 12 hours earlier. The nurse explained that Louie had nec but they couldnt tell the extent so he neede to be transferred. The hospital couldn’t operate on Louie so was waiting for a special neonatal team and ambulance to arrive to stabilize Louie as his blood pressure was low which seemed to take forever, at 2oclock sunday afternoon Louie was transferred to st georges hospital neo natal unit for surgery. At ten oclock that night he had the surgery but the doctors explained that the whole of his bowel was white which meant it had no blood flow so there was nothing they could do.

I don’t remember much else, the family arrived to say goodbye and we had Louie blessed. At 2.50pm on monday 1st of december we switched off Louie’s life support machine. Although he went very peacefully and it was very dignified, I wish nobody ever has to go through what we have had to. I lost my first baby megan due to preeclampsia so knew every think about loss in pregnancy. I just wish there was more information about diseases such as nec.

Kayleigh’s story

January 2nd, 2009 by Lisa and Brian Dingess

Our daughter Kayleigh Dawn was born at 23 weeks on Sept 4, 2008. Kayleigh lived for 43 days in the NICU. She was a beauitful baby girl with a fighting spirit. My husband was so amazed how much she looked like her big sister.

She was doing well. Her head scan results were negative for IVH grades 3 & 4. She had a grade 2 on 1 side of her brain that was absorbing. We were getting more hopeful for her survivial. I believe starting Kayleigh on formula was the start to her problems. I also wish some would have suggested using a milk bank prior to her feeding. I was unable to breast feed. Anyway the what ifs will not bring her back! She did not tolerate her feedings and they were discontinued. By Sept. 30 she had a visible abdomen mass and her belly was starting to get swollen. On that day she was also tranferred to an isolation nursery because she came down with MRSA. My husband & I were devastated by this news. In the meantime her belly was getting bigger.

While small talking to one of her nurses, she said not to be worried the staph infection is your least worries and will soon be cleared up. She went on to say that if she came down with an infection that went into her blood (septic) that is something to worry about. My how things change it only seemed a short time later that this is exactly what happened. Our doctors told us that she now had an infection that had entered the blood, however they could not pinpoint the source of the infection.

In the meantime her condition seemed to deteroiate somewhat. At this point my wife and I tried to be there every miniute we could. It all seemed to start spiraling out of control for our beautiful small but perfect little Kayleigh early on Fri. Sept. 10-08 at around 2am a young attending doctor made a decesion to call her head doctor, and from there a wonderful doctor and his team from Rainbow Babies and Childrens hospital were called in to perform emergency surgery and determine why she was now swollen. I was told as soon as they opened her abdomen up, there it was staring them right in the face, nec had perforated her small intestine wall and therefore she had about a 3 inch section removed. My wife called me around 7am to tell me the news. I immediately went to the hospital with my mom to see her. I was at this point losing it very quickly. However I was relieved that the source of the infection was now found and the surgery was over. When I arrived and saw her I could not belive my eyes she was so swollen I thought she was going to explode, and seeing the extent of the incision was all I could handle, why did my beautiful little gift from the heavens have to look like this?

I was able to talk with the doctor who performed the surgery. He told me how amazed he was at how her little body seemed to be doing everything it could to hide and fight this. Now we were being overwhelmed with nurses and doctors telling us how sorry they were to here this news. If I rember right I said don’t be sorry she has had the surgery and now she can start down the road to recovery. I think at that point the staff knew her chances were grim. Our attending doctor said that the next 72 hours for her would be crucial. If she could just get through the next 3 days that is a major step for babies who receive this surgery procedure. On Sat the 11th she seemed to stay stable vith her main vital signs. I told my wife that we should stay home tonight and try and get ourselves refocused and some much needed sleep. However she said that she just wanted to go up and say goodnight to Kayleigh and she would come right home in about an hour.

I received a call at about 4am Sun Oct 12 from my wife that Our angel was at this point very critical and had not urinated in since the surgery, she was now dealing with renial failure. The three different medications that were given had no effect. I went right to the hospital and after the doctors told us of the sittiuation at hand that there was nothing more medically the could do. They told us that they wanted to call a meeting with my wife and I on Monday morning with our attending doctor to discuss the next course of action. We told the staff that we wanted our beautiful Kayleigh’s ventilator removed, and all of the 7 plus lines she had hooked to her. They told us she would not be in any pain and she had not been in much the past 3 days from being extremely sedated for her own comfort. We put a call into our church and told them the news they were able to track down our reverand on his way to mass and reroute him to us. Our reverand, my wife, and I talked to our beloved Kayleigh and said some prayers for her. Then my wife and I told our beautiful angel that it was ok for her to go to Heaven and be with her new father and savior and all of the other little angels that have gone on before her. They put my wife and I in a private room and brought us our little Kayleigh to hold her while she passed on in my wife’s arms.

We stayed there holding her for hours listening to the sounds of the ocean from a cd we had obtained for her also, seeing how tried and true it has become with our 5 year old gift from the heavens Kayleigh’s big sister Marissa Grace. I am going to come to a close here now, Kayleigh I will never forget the 43 days of such love you brought your Mother and I. I look forward to the day when I will see you again and I am able to take you on a hike in the beautiful mountains of heaven on a warm fall day when the leaves are ablaze with all of the color of our fathers kingdom!


Very Low Birth Weight Premature Infants are at Higher Risk of Dying With Short Bowel Syndrome

January 1st, 2009 by Dr. Jae H. Kim (MD, PhD, FRCPC, FAAP)

One of the nation’s largest premature infant databases (NICHD) has been examined to determine the risks of dying for infants with short bowel syndrome or SBS. SBS is a devastating condition where a significant portion of an infant’s small and large bowel are removed due to damage or dysfunction. Subsequently, the infant is not able to be supported nutritionally with their own bowel and require long-term intravenous nutrition. As expected from most neonatal experiences, the biggest contributor of SBS is necrotizing enterocolitis (NEC, 96%). In this study the investigators found that very low birth weight infants (less than 1500 grams at birth) who had surgical NEC were at higher risk of dying in hospital than if they had NEC without surgery (also called medical NEC) or compared to all infants with SBS. They found an overall incidence of SBS of 0.7%. They also found that the risk of dying was the highest in infant who had surgery because of NEC (53%). When they examined the outcomes of the survivors, they found that those with SBS were more likely to be small and poorly grown and this included smaller head sizes. It is important to remember that head size correlates well with long-term brain development. This study underlines the ongoing burden of the consequences of NEC on both mortality and morbidity.

Very Low Birth Weight Preterm Infants With Surgical Short Bowel Syndrome: Incidence, Morbidity and Mortality, and Growth Outcomes at 18 to 22 Months Conrad R. Cole and colleagues, for the Eunice Kennedy Shriver NICHD Neonatal Research Network, Pediatrics. 2008 Sep;122(3):e573-82.