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Eleven days ago from this date 11th Oct 06 we nearly lost our first baby girl to vasa previa. my name is clodagh and this is my story. my partner richard and I where delighted when I fell pregnant in January 06 this was our first baby. My pregnacy was normal we would attend our 6th weekly ante natal check ups and we would see our little girl on the scans. our consultant always said things looked great in all our scans, we were so excited. By my 3rd trimister at 35 weeks while laying in bed i felt a sensation i turned on the light and saw blood every where, Richard phoned for an ambulance and i was rushed to hospital, the bleeding stoped while i was in the ambulance all i could think off was my little girl and how would we cope. richard and my mum followed in the car behind the ambulance, while in the hosp. the doctorr checked the baby heart rate and it was normal they did an internal and also an ultra sound the baby was fine they said and my placenta was high they put the heavy painless bleeding down to intercourse,and sent me home.

Richard and I waited 4 news about Caitlin. tears just streamed down our faces, the doctor started to talk explaining what had happened and he got phone call from the neo natal staff saying that our little girl was doing better, better than they had thought I was taken to intensive care to see her, she looked so tiny n her incubator and she was on a ventalator with machines all around her she was so beutiful she was my little miricle sent from god. every hour was a godsend, 24 hours later she was of the ventalator my little angel is now 12 days old and is a little fighter she has been through so much trama but has come so far in her 11 days the doctors explained to us that their could be brain damage because of lack of oxygen to the brain, Caitlin went for a MRI scan of her brain at 5 days old it came back normal Caitlin didn't have any fits either, which is amazing. every day she is improving she is still in intensive care this is day 12 I cant wait until I take her home my little angel.

clodagh

I have been diagnosed with vasa previa I am 24 weeks pregnant, I am looking for info on this and what to expect from here on out, I have not been put on bed rest just told not to do anything strenious, if anyone can tell me what to expect I would greatly appreciate it thank you - Silena

This is one mum's story of coping with Vasa Praevia, a rare but nonetheless harrowing condition.

My name is Carol Prentice. I live with my husband Stephen and our precious five year old daughter, Rebecca, in Lanarkshire, Scotland. Her story of survival and success is a miracle in two ways. Here is our story:

Firstly, I have a history of severe and chronic Endometriosis, which I have had since I was diagnosed at the age of 13. Thus I believed that I would not be able to conceive. I have had many surgeries and drug therapies over the years and thanks to my excellent Gynaecologist, I was told I had a "six month window of opportunity" to conceive after my last surgery in 1997.

Secondly, my miracle daughter is a survivor of Vasa Praevia. Vasa Praevia, reported in one in every 2,500 pregnancies, is a rare condition in which foetal blood vessels from the placenta or umbilical cord cross the entrance to the birth canal, beneath the baby. The condition has a high foetal mortality rate (95%) due to rapid foetal haemorrhage resulting from the vessels tearing when the cervix dilates, membranes rupturing, or if the vessels become pinched off as they are compressed between the baby and the walls of the birth canal.

We had been married for a year and a half when I discovered I was pregnant in September 1998. I think we were both shocked but completely overjoyed. Our joy was compounded by the fact that we had always thought that I would not be able to conceive. Being pregnant was like a dream come true! We had talked about a family but we were never going to let my medical condition take over our lives.

I was working as Acting Principal Teacher of Learning Support in a local Secondary School, enjoying the challenges of a new job and meeting new pupils/staff. However, in January 1999 I collapsed at work with pain in my abdomen and around my kidneys. I ended up in hospital and I had some scans that were all clear, but as they weren't sure what was wrong, they kept me in for a week. I now had pain and cabin fever! I had decided that it was due to pain from my Endometriosis scars stretching. The hospital finally agreed and let me go home but I was signed off work! I had to rest and found that difficult to do.

Things went smoothly until March when I had a massive Epistaxis (nosebleed) and ended up in hospital again with my nose packed several times. That was no fun and quite frightening as they couldn't explain why it had happened either. It was just one of those things!

Life settled down again until nearer my due date when the nosebleeds started again, so it was complete rest. That drove me mad, as I wanted to be doing things! I think the nesting hormone had kicked in and I was frustrated to say the least by my inability to help with anything. I also spent an afternoon at the Day Care Unit due to raised blood pressure but managed to relax and got home that night.

In light of this, my Consultant decided that it would be better not to let me go past my due date and that due to my Epistaxis it would be better not to have me pushing hard. This decision probably helped to save Rebecca's life!

I was admitted for induction at 1520 on 9th of June 1999. At 1840 induction began. At 2330 it was decided that everything was favourable for ARM (induction) the next day and at 0105 I set off for the Labour Ward. Then it was up for a shower and a wander before they decide to break my waters at 0807. This is when things went horribly wrong.

I could tell by their faces that something was not right. They told me there was a problem and that I would be going to Theatre for an Emergency Section as I was haemorrhaging badly. I had to be put under a General Anaesthetic and I all I remember is asking if my baby would die and also telling them I was very frightened.

They were very quick at getting me to Theatre and Rebecca Hamilton Prentice was born weighing 8 lb 9 oz at 0815 whereupon she was swiftly transferred to the Neonatal Intensive Care Unit (NICU). She was born without a heartbeat, did not breathe for six minutes and had lost half of her blood. She had two transfusions and I had two units of blood. She was put on a ventilator and given drugs to stop her fitting. Thankfully she only had one seizure. Her weight, combined with the fact that she was full-term and had all her organs fully developed, stood her in good stead. Without the quick delivery and the expert medical intervention things could have been so different! I did not see Rebecca until later on that day when I was taken up to NICU in my bed.

Stephen had been working night shift and was called by the hospital to come in when I was in the Labour Ward. He never expected to be greeted with the awful news that met him that morning. Stephen saw Rebecca in Intensive Care four hours after she was born. He stayed with her a while and then the nurses gave him a photograph of her to bring down to let me "meet" my beautiful daughter. I was numb and just held on to Stephen.

The Paediatric Staff in the NICU were marvellous and we have so much to thank them for. It is a debt we could never hope to repay. The Doctors told us that they suspected Vasa Praevia but that the Path Lab would confirm this once they had analysed the placenta. They then carefully explained what Vasa Praevia meant and reassured us that we could ask questions at any time about what the implications of this may be. Shortly after Rebecca was born they told us that they did expect her to survive 12 hours. When she did, they told us it could be the next 24 hours that we could lose her. They were open, honest and supportive and we appreciated how they treated us as well as how they cared for Rebecca. They simply could not tell what the long-term prognosis would be. Head scans did not show anything unusual, so it was a case of just watch and wait.

Rebecca had a disturbed night but no more seizures. She came off her ventilator the next day and then each day her drugs were reduced. We were able to see her any time and we could hold her through the incubator. The NICU nurses also helped us to hold her, something that would otherwise have been awkward as she was connected to various tubes and monitors. She looked very out of place in the NICU as she was very big compared to the little "sugar bag" babies around her. We still laugh when we think of how they had to get a special, large incubator to accommodate her. She was very long at twenty-one and a half inches.

On day two all the Grandparents were able to meet their new grandchild. They were overwhelmed, just as we were. By day three she was out of Intensive Care and in the Special Baby Care Nursery. She was sucking all feeds from a bottle, which was fabulous news. I expressed milk for her and looked forward to trying to feed her when she came up to the Ward.

The nurses were all wonderful and very supportive. The Consultant neonatologists kept us up to date with her progress and they were pleased to see that she was making such progress. However, they explained that because of the trauma of her birth, she could be brain damaged and her organs may have suffered damage as well. We listened and knew that we would love her anyway, no matter what happened.

On day six she came up to the Ward to be with me. It was wonderful to have her with me all the time! The next day the Paediatricians checked her and I was told that if I felt well enough I could go home with her. I was on the telephone to Stephen like a shot and out of the hospital very soon after. It was a beautiful sunny day when we left the hospital for the first time as a family and headed for home. One of the Paediatricians was coming in to work and stopped for a chat. He was delighted with her progress but reminded us that we would have to watch her carefully for the next two years to see if there had been any damage. Neither Stephen nor I would wish those two years of watching every developmental step on anyone. It was very stressful and intense. I didn't go back to work as we decided it would be best if I stayed at home with Rebecca and looked after her.

We saw one last Consultant in September 2001 just to reassure ourselves about her organ development. He checked her heart, lungs etc, took some measurements and did some tests on her. His conclusion? A very bright girl and we should go away and treat her like any other child! The relief was immeasurable. Stephen and I both just sat in the car for what seemed like ages afterwards taking in those magical words.

Well, Rebecca is now five years old, and is making excellent progress. She is a bright, happy, inquisitive, confident and talkative child. She adored Nursery School, and loves ballet, tap dancing, music, theatre, playing with her Irish Setter Murphy, and she is already reading and doing simple maths for fun. She started Glengowan Primary School on 17 August and loves it. She looks very smart in her uniform as well!

We know that we are extremely fortunate and we count our blessings every single day. We are so lucky to have Rebecca in perfect health and consequently we cherish life. This is why I have become involved with the work of the International Vasa Previa Foundation (IVPF), the Health Council and various other maternity organisations. I hope that I can help to raise awareness of VP amongst women and professionals within the UK and maybe help influence changes, which mean that babies don't have to die needlessly.

Carol Prentice

SUPPORT LINK

International Vasa Previa Foundation The International Vasa Previa Foundation (IVPF) was established in January 2001 by parents who had the unfortunate luck to experience vasa previa first hand. Their aim is to raise awareness about Vasa Previa and additionally, adjust the medical rules and protocols worldwide in such a way that fatal outcomes associated with vasa previa can be prevented. Their site offers information about Vasa Previa, personal stories, professional stories and an online Forum and Chat Cafe. You can also subscribe to a free Newsletter or join their email discussion group. International Vasa Previa Foundation, Inc. P.O. Box 272293 Boca Raton Florida 33427-2293 USA www.vasaprevia.org Email: info@vasaprevia.com

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