Archive for May, 2009

Oliver and Joseph’s story

May 26th, 2009 by Matt & Joanna Froud

We underwent IVF in September 2008.
After all the treatment treatment, my wife produced so many eggs and her ovary’s were so swollen that the doctor advised us to only put back one embryo and not two as they normally would in IVF.

We were stunned to find out a few days later that it was a success and on top of this the embryo had split and we were pregnant with MCDA identical twins. We were told there was around a 2.3% chance of this happening and along with it we would have a very complex pregnancy, which would include many additional risks. We were so excited, but thinking back, how naive we were at this time…

As the pregnancy went on we were sent to Queen Charlotte’s and Chelsea Hospital in Hammersmith for fortnightly scans. At around 17 weeks, we had a scan and came out to the waiting room as normal while we waited for our notes to be written up. They then called us back in for a chat. They told us that one of the babies had a reduced amount of fluid around him and was around 25% smaller than his brother. To keep an eye on things they wanted to see us every week for a scan from now onwards.

We went home very worried, but we felt we were in the best hands and continued to go for regular weekly scans. We also requested we were permanently transferred to Queen Charlottes’s as we were very unhappy with the care we were receiving at our local hospital and had much more trust in the staff at Queen Charlotte’s. Eventually we heard we had been accepted which helped reduce our worry a little.

As the weeks went on, the fluid reduced and the size difference increased. Both of the baby’s doplers were always good and their hearts and other organs seemed to be functioning well. At week 29, the size difference reached around 57% and it looked as the smaller baby’s growth had tailed off.

The doctors advised that we had a planned c-section the following Monday at 30 weeks and 3 days as he felt the babies now had more chance outside of the womb with the help of Neonatal Intensive Care than they did inside.

We went in for the c-section on Monday 27th April 2009. The c-section went extremely well and both our boys were born at 12:29 & 12:31 respectively. Oliver weighed 1400 grams and his brother Joseph just 635grams! We were very worried, especially about Joseph, but we knew we were in a great hospital, all the staff had been amazing and if anyone could help then we were in the best place.

In the first few days, both boys seemed to be doing very well, Oliver was obviously much further ahead of Joseph due to his size. Then 6 days after birth Joseph developed NEC. It was a very severe case, his bowel eventually perforated. The doctors arranged for a Neonatal Transport team to take him to Chelsea and Westminster hospital for surgery, but he was never stable enough to move, let alone be operated on. We had to accept there was nothing anyone could do for our little man now, we gave him lots of cuddles before asking the doctor to remove his breathing tube and he eventually died in his daddy’s arms at 15:05 on Monday 4th May at just over 1 week old ;-(

We were both devastated, but we knew we needed to stay strong for his brother Oliver. Oliver was doing really well, his feeds were being gradually increased and he managed to move out of intensive care and into the special care baby unit that night, so we didn’t have to go back into the high dependency unit after Joseph’s death.

We lived about an hour and a quarter from the hospital, but we visited Oliver daily. Along side this we also had to get on with registering the births, Joseph’s death and all the funeral arrangements. A few days later I developed a throat infection and had to stay away from the hospital for a few days, but my wife visited Oliver every day. My wife then developed Mastitis in her breasts and was in agony for many days so felt unable to visit for a few days. I eventually got over my throat infection and managed to visit Oliver on Tuesday 19th May, the day before Joseph’s funeral. I had a wonderful day with him, the nurses were saying how well he was doing, he was the top baby in the nursery at the time!

The day of Joseph’s funeral came. It was extremely upsetting, be we thought we gave him the best send off we could. We finally arrived home that evening and both burst into tears. An hour later we received a call from the hospital to say Oliver has been sick twice in the last few hours and wasn’t very well. They told us not to worry too much, it wasn’t anything major, they had stopped his feeds for the time being and were keeping a very close eye on him. They suggested we got a good night’s sleep and came in in the morning. We were so shocked as we began to re-live Joseph’s death. We decided to go straight in and we arrived at about 10.30pm that evening. He looked like a different baby, he was back in an incubator with all the monitors back on him, and his tummy was distended just like Joseph’s was. We feared the worst, but tried so hard to keep positive. We were told that they thought he had developed NEC, our hearts nearly stopped, we couldn’t believe it, he was doing so well just 12 hours earlier, even the nurses were so shocked to see it happen. We were told it didn’t look as severe as the case with Joseph, but it they were pretty sure it was NEC all the same. They took regular blood gasses and x-rays of his tummy. The last x-ray showed the bowel had perforated, but they couldn’t tell how bad it was. Unlike Joseph though he was stable enough to be transferred to Chelsea and Westminster hospital for surgery and the surgeon was happy to try to operate and see if he could save our little man. It seemed to take forever for the Neonatal Transfer team to arrive. They had come all the way from Margate as the London ambulances were all busy. Eventually they arrived and made Oliver stable ready for his journey. We were told to get to the Chelsea and Westminster so we were there ready to sign consent forms and speak to the surgeon prior to surgery, so we made our way over. Oliver over took us in the ambulance and eventually we met up with him at the other end.

The surgeon spoke to us and explained all the risks, but he thought he was in reasonable shape for his condition and would stand a reasonable chance of survival. They then took him down to theatre to prepare him for the operation. We said a quick goodbye to our little man and then we went to have some dinner as we knew it would be at least 2 hours before we would be able to see our little man again. We returned from dinner and went back into the parent’s room and waited for the news. Eventually we noticed the surgeon arrive back. He was talking to someone outside our room, but we could tell by the look on his face the news was not going to be good ;-( He entered the room and sat down with one of the consultants. He told us he was very sorry, but when the opened up his tummy, his entire small intestine had been destroyed by NEC. Removing it was not an option; he could not survive on his large intestine alone. We just couldn’t believe what we were hearing! He said they had stitched him back up so we could see him for as long as we wanted before they eventually removed his life support. Myself, my wife and his grandparents spent time cuddling our little man in his last hours. We eventually decided it was time to let him go and we asked the doctor to remove his breathing tube. He was still on morphine and very sedated, so could feel no pain. I continued to cuddle him until he finally slipped away to be with his brother up in the stars!

Now, 36 hours later we are still completely devastated and will be for some time to come I can imagine. We just cannot understand why life has been so cruel to us. To a degree, we had sort of come to terms with loosing Joseph as he was so small and we believe he had given up his life to help his brother survive and thrive. But now Oliver has died we just don’t know what to do, where to turn. It is as if our future and all our hopes and dreams have all died along with our boys!

We like to think that Oliver just missed his twin brother so much he wanted to be with him.

Although we get some comfort from knowing they are now together, we still cannot describe the desperate feeling of loss we both have in our hearts. It is currently unbearable.

If anyone wishes to get in touch we would love to speak to them. Maybe we can provide each other with support in our times of need?

I will also be trying to find out more about research into NEC. We have already raised over £2,500 for the Neonatal Unit at Queen Charlotte’s, but we would love to find a worthwhile research project which we could raise some money for to try and help to ensure another family does not have to go through this devastating loss again…

All our love,
Matt, Joanna and our little stars Oliver & Joseph xxx

Nevaya’s Story

May 22nd, 2009 by Myrlande Magloire

I would like to vent my story about my angel, baby girl Nevaya. My Nevaya passed away on Good Friday. She was born at 24wks, weighing 1 3oz. She was beautiful. My first child. I was told she would not cry, and she let out three loud cries. I was told she would not open her eyes, and she opened her eys. I was told was not going to move, well, she was active then ever. She lived for 1 month and 2 weeks. I enjoyed those precious mornings and nights. I miss her so much. She battled with medical NEC. She had surgery, had a colostomy. She was doing fine on breastmilk, But my supply ended and they started her on formula; that was when the condition got worse. I guess I blame myself; I should have tried harder. I was told she caught a communicable intestinal virus (origin, I was not told). I am a Nurse, I tried to stay on top of them, but I came up short. I felt so useless and disgusted by my profession, because I could not do anything to help my baby during her final hours. I can’t face the fact she is gone.

I miss her. I miss her ways. As preemie as she was (she gained weight- 2.5 lb). I am so glad I found this site. I really needed to talk to someone that has experienced what I’ve been through. Please someone respond if you can.

Calib’s story

May 22nd, 2009 by Uknown

I been wanting to make a web sit but i found this one.

I was 27 weeks and 6 days. I was in and out of the ER all week. Because of pains from a bladder infection. My boyfriend took me feb 23 and they told me “it’s just the baby sitting on the bladder.” They sent me home and told me to drinks lots of water. However later that night at 4:30 I was taken back to the hospital by my grandparents and by then it was too late. I was 10 inches and ready to give birth. My Calib weighed only 2lbs and 7oz. Even though he was the SMALLEST baby in the nicu he was breathing on his own and doing very well. One night about 7pm I got a call saying they need my consent to moved him again to another hospital. 3 days later the doctors told me he was full blown NEC and there was nothing they could do. At 13 days old he passed away in his daddy’s arms. It’s been 2 months now there not a day that goes by that me and his father dont think about him. As of today I’m a senior in high school and I plan to finish with the class of 2009.