Life itself is the most wonderful fairytale.

Recent Stories:

Story Dated: 30.01.10

Giving Thanks.

About 5 and half years ago, my husband and I walked blithely intro a 2nd trimester ulstrasound for our baby-to-be, our 2nd child, mostly wondering whether she would be a boy or girl. About an hour later we emerged, shellshocked, bearing the news that our baby was showing some early signs of a serious brain abnormality, known as ventriculomegaly. This meant that the fluid spaces in her brain were enlarged (a condition known post-natally as hydrocephalus), the larger these spaces become, the less space there is for healthy brain tissue to develop. We were assured that the measurements were not wildly outside normal, and the problem would probably turn out to be nothing, just a variation on normal. We would, however, have to be monitored for the next few months, mostly via ultrasound, to see how the situation progressed. We were placed under the care of the imposingly named “Foetal Diagnostic Unit” at Monash Medical Centre.. We tried not to panic, and to assure ourselves that everything would be fine. We loved our baby already, I’m pretty much a goner once I feel those first little kicks. It would all turn out be nothing.

Over the next 6 weeks, our baby’s condition progressed rapidly from ‘just outside the range of normal’ to a prognosis that (while it varied with each new specialist we met) ended up at a 90% chance of some level of physical and intellectual disability. We were asked more times than I can remember to make the decision no parent-to-be could fathom having to make. We met with paediatric neurologists, paediatric neurosurgeons, genetic counsellors, pyschologists, numerous neo-natal specialists and fellows, nurses, doctors and my obstetrician (who was, thankfully, the only person who did not have an opinion on what we should “do”). We had countless ultrasounds, an MRI, a catscan, and later on, an amniocentisis (to rule out the handful of genetic conditions and chromosomal abnormalities which can be detected this way). At 26 weeks gestation, after 7 weeks of close monitoring and testing we knew this: she would have some big problems. What they would be exactly, nobody quite knew. We had reached the extent of what these highly educated people could tell us about the brain of this little person growing inside me.

And then we decided to just let our baby be. However she would come to us, that is how we would welcome her, and even if she didn’t come for very long, or was inside a body and mind that the world doesn’t consider ‘normal’, then we would welcome her, and love her just as much as we could.

This is the first line of the diary I began keeping a little later on in that pregnancy, once the shock had worn off and I began to think practically about the years ahead. “Hello my darling. I am writing this, your story, down for you, even though we don’t yet know whether you will ever be able to read it…..”

At 26 weeks we stepped away, as much as we could, from the (fantastic, devoted, highly skilled and well-meaning) intentions of the medical practitioners at the Monash Foetal Diagnostic Unit, who by their own admission could do nothing further to help until she was born. We were prepped for possible brain surgery a few days after her birth, and from then on the approach was to wait and see how severe her problems were when she was actually with us.  We agreed to just 2 more ultrasounds during the 3rd trimester, just to make sure we had some idea what to expect at birth. We spent those months preparing ourselves, as much as anyone can, for what may lie ahead. I believe I owe a great deal to Applied Kinesiology, but that is another story. I also determined to make her birth a beautiful healing experience, and therefore also owe a great deal to Hypnobirthing, and Esther Swoboda-Thurneer. After a drug free (oh, ok, well apart from that hour where I refused to let go of the gas dispenser) birth the first words out of my mouth were “Oh, she looks just like a normal baby!”. An Ultrasound 5 days after birth showed her brain to be totally normal. A final MRI, or catscan I can’t even remember now, a few months later confirmed this: she was the miracle that medical experience told us was impossible.

On Friday this baby started school, and while she is not yet reading (I believe childhood is for being a child) we long ago gave up on visits to paediatricians to monitor her development. She is perfect, as any 5 year old is.  I cried as much, but maybe also a little more, than any other mum does on her baby’s first day at school. I am so thankful. Her name, Mattea, means Matthew in Italian, which, in turn, means “gift from God”.

m-sb1fam-jan10-9fam-jan10-111m-sb2m-sb3fam-jan10-14

At 36 weeks we had one final ultrasound, to check her head circumference and to verify that it would be safe for me to try give birth naturally. The radiologist

told me she had incredibly long eyelashes, and she sucked her thumb. Seems she was right……

fam-jan10-18m-sb5

43 Notes Left

  • Sarah – I have goosebumps and a tear rolling down my cheek. What a beautifully inspiring story with a miraculous outcome!!!! Your daughter is gorgeous … as are you! xoxo

  • Sarah.. I am in tears and goosebumps all over my body. What a miracle indeed. Wow… Amazing story. Thanks so much for sharing. She is perfectly beautiful!!

  • Marieke on said:

    I too have tears welled up in my eyes. Perhaps because it hit so close to home. What an incredible story. Your daughter is just beautiful.

  • hailey on said:

    I remember Renee telling me this story… amazing!

  • ((((hugs))) just beautiful.

  • Oh look at that gorgeous girl… long lashes and sucking her thumb. So beautiful! An amazing story too, how wonderful of you to document it for her.

  • What a beautiful story Sarah, and she is just beautiful… thank you for sharing…

  • Oh my this sounds just like my story!

    I have an alert set up on Google so that I can write to people who are on the rollercoaster with ventriculomegaly and try give them a little light – so what a wonderful change this makes to see someone else who has come out of it with a positive.

    Like you, I had to face “The Decision” of what to do and even with each scan showing the ventricles getting bigger (up to 18mm) and my chances of a ‘normal’ baby dropping I took my chances. I have 2 other girls already and I’m on my own but I was prepared for mental/physical handicap and a shunt after birth, and I had to fend off ‘is it worth it’ from well-meaning people…but just like you, Baby T not only survived birth, got 10/10 Apgar but only spent 2 hours in Special Care and came back with a label on her cot saying ‘treat as normal baby’. After all that!

    Her ventricles were still enlarged at birth but we were soon discharged from the follow ups because she was showing no developmental delays.

    As I type this she is walking about in her new shoes, showing no signs of needing that wheelchair!

    Thank you for sharing your story.
    Adele

  • Sarah, I sit here in a pool of tears!! Tears of joy. Please keep adding to the diary, she has so much more for you to add. How precious your beautiful girl really is……..pass the tissues….xo

  • Kerri L on said:

    Oh Sarah, what a moving, emotional and heartwarming story. Your little girl is just gorgeous and what a beautiful and perfect name you gave your little miracle. The thumb sucking and eyelashes shot – too precious. Love the handmade crown too, adorable! :)

  • Oh this post has us all in tears! She is beautiful.

  • Good grief! Yes, I’m a blubbering mess of course. She is so, so gorgeous, we need to see of photo of her in her school uniform too. I have been thinking of the two of you lately as I see my big girl walking into school for the first time too. Sar, when is that book coming??? You’re a natural talent. Love ya and chat soon -x-.

  • Peter Charlesworth on said:

    Sarah… reading your words brought me to tears….
    I am so thrilled for your family and for you in particular. As you know I am quite isolated form the life I once knew, but reading your words has touched a part of me that will always be there… (I kinda feel like family still). She is a gorgeous little girl who I’m sure will keep you on your toes the way all little ladies should with their parents. Thanks so much for sharing.
    Pete (and Scarlet & Brydie).x

  • Sarah, the most beautiful post. Such an emotional and heart-warming start to her wonderful life. xoxo

  • Oh Sarah, she’s perfect. Those eye lashes, that smile, those twinkling eyes. And she’ll no doubt always know how special she is, and how loved she is, with you as her mother.
    xox

  • I truly have no words Sarah…xxxx

  • ok Sarah, I’m SOBBING!!! You wrote that so beautifully. What a precious little soul she is, and so beautiful. Congratulations on the big milestone of starting school. I hope she’s enjoying it. My Ethan’s still not too keen just yet.

  • Olivia G on said:

    Sarah, you have a beautiful way with words and what a remarkable young lady she is too. How lucky she is to have her story documented so eloquently to read over the years to come. Excuse me now while I, like others, get a tissue. Congrats on the first-day-of-school milestone and triumph. Liv, Stuart & Sydney

  • wow, I have goosebumps reading this – thank heavens for miracles.

  • Oh Sarah, this is one of the most touching stories. I have such a lump in my throat. Beautiful. Your images as always are divine, but your story is truly touching. Thank you for sharing it with us, and congratulations to your big school girl Mattea…What a true gift from god. xoxoxoxox

  • Oh Sarah, what an ordeal for you all…I can’t even begin to imagine what you went through in that pregnancy. Thank you for sharing such a personal, heartwrenching story and I’m so glad that your little girl is perfectly healthy.

  • Bron on said:

    wow.

  • Thank you so much for sharing your heartwarming story of hope. She is just so perfect! I hope she loves every moment of school. My eldest started school this year as well. Such a bitter sweet time!

  • Cara on said:

    Thank you for sharing your story. It has given my husband and I hope, as i am 22 weeks pregnant and been told the same things. My sister emailed me the link to your page after our fourth doctors appointment. Thanks for sharing she is a beautiful little girl with a perfect name.

  • What a wonderful story !! your daughter is beautiful and amazing :)

    Our son who will be 11 next month was also born with VM we were told pretty much what you were told and at times not given much hope.

    Well we proved all them docs wrong! but i guess you could say we havent been as lucky as you our son does have problems (to many to mention) but everyday he brings joy to our lives and is in no way near the shell of a child we were expecting!

    He is a bright and eager to learn and doing fantastic.

    We are actually as we speak taking part in a study of children born with VM and hope to help families in the future with the findings.

  • hi, congrats and could you please tell me what were the measurements of the ventricles at your last ultrasound or at an average. thanks.

  • Tracey Wadsworth on said:

    I actually cant stop crying… I am almost 30 weeks pregnant and our wonderful little baby has enlarged ventricles up to 11mm – progressively getting bigger at each scan. It is so nice to read a positive story which fills me with hope which – we too have also given up on all the testing etc because we will love our little baby no matter what. Cant wait to finally hold him and update with another positive story. Fingers crossed!! Your daughter isb eautiful.

  • Nanette on said:

    Your beautiful daughter has done so much for those expectant Mothers and Mothers who have babies with that “diagnosis” of ventriculomegaly.
    It is important to remember that ultra sounds were not done on fetuses years ago. Who knows if half of us walking around don’t have ventriculomegaly.

  • Nicky on said:

    What a wonderful post! I was a first time mother to be (after previously suffering an early miscarriage) when my son was diagnosed at 22weeks with VM. I have no idea of the measurements, but at the very end of normal I was told.
    I was sent for tertiary scans and spoke to so many specialists who were wonderful but weren’t too worried. We were lucky in that our son’s ventricles never enlarged any further. He was born completely healthy and treated like any normal baby. He had an ultrasound on his head at 6 weeks of age where our fears were allayed, being told all was fine and it’s just the way he is. We’ve continued to monitor his head circumference as the years have gone by with no real worries at all expressed by his health nurse (although he does have a big boofa head, but he gets that from his Daddy ;) ).

    I LOVE hearing there stories where people are told to all but give up hope and to have everything turn out totally fine. Your daughter is just beautiful!! Congratulations!

  • leanne on said:

    thank you for giving me a ray of hope xx

  • Squishy's Mum on said:

    So infrequently have I found positive stories re: VM so I am very thankful you have written this blog. Just yesterday we had the diagnosis of VM confirmed – 34wks tomorrow. Our baby’s ventricles measure at 20mm with no sign of head enlargement, meaning definite loss ofbrain matter. I am devastated, the drs seemed to offer little hope. I have tears of joy for you and your daughter.

  • Pingback: January 7-13 {One photo every day: January 2012} | Sarah Black Photography

  • Blessy on said:

    “And then we decided to just let our baby be. However she would come to us, that is how we would welcome her, and even if she didn’t come for very long, or was inside a body and mind that the world doesn’t consider ‘normal’, then we would welcome her, and love her just as much as we could.”

    This is my favorite line. Thank you so much for sharing. My baby’s coming next week and she’s diagnosed with hydrocephalus. But no matter what, we would love her just the same.. (or even more) =)

  • shagufta on said:

    hi, I am so overwhelmed by your story, my baby is diagnosed with severe ventriculomegaly and the Dr said that its very unlikely for the baby to survive and if the baby does survive that will be with severe disabilities. I am praying for a miracle, I would want you to pray for me. you have a very beautiful daughter, may god bless her.

  • Hermione on said:

    Thank you for writing this story. We are in our 9th week of extra scans/test etc and getting rather tired of the doom and gloom which is preached at every appointment. Our baby is considered to have mild ventriculomegaly, and although 9/10 babies in this category develop at normal rates, the doctors still insist on forcing a worst case scenario down our throats – WE GET IT PEOPLE – THERES A CHANCE OUR KID WON’T BE EINSTEIN!
    I think after we’ve had the results of our second MRI scan I’ll stop going to the extra appointments – like you said, there’s nothing they can do to change things and no one can categorically say how the ventriculomegaly will affect our child. Termination just isn’t an option for us.
    All this worry is very tiring – I think it’s time to sit back and enjoy the last few weeks of pregnancy.

    You’re story is great, and really goes to show that even the worst expected outcome doesn’t always occur no matter how many stats and percentages you throw at it.

  • carolyn brown on said:

    I am 22 weeks pregnant now and or baby has been diagnosed with VM too. The measurement had grown quite a lot in 6 day gap betwen scans!! We had an amnio and are awaitung the results. w have had downs and 2 other chromosome disorders ruled out now but await to hear the rest!! I am worried what this will show and what this will mean for our little precious baby. To read such positive stories and to hear he or she could still be perfectly healthy is fantastic!! just waht i need at the minute!! I hope i can add more to this in 2 weeks when we know more and have had a further scan. Fingers crossed!!

  • eleanor barcelo on said:

    i am 26 weeks pregnant now and our baby has been diagnosed with VM too. The measurement is 1.4mm and my ob told me that if it will enlarge to 1.5 above the baby will be a hydrochepalos. i ask my doctor if there is a medicine for this case. but she told me there is no medicines. we just have to wait for our next ultrasound. and praying to God that our baby will be okey.. to sarah: you have a nice story.. can you tell me more about the VM because you have an expert physicians in your country compared to us here in the philippines. hope to hear some more from you..god bless

  • Maria Miles on said:

    I have just heard from my son who lives overseas that their baby, scan at 21 weeks has diagnosed borderline bilateral ventriculomegaly. They are shell shocked at the moment. I just needed to get on the internet and find out exactly what this meant. Having found these wonderful inspiring stories it has helped me in understanding what is going on. I know it is very early days for them now, and they have a follow up in 1-2 weeks. The rest of the fetal anatomy were visualised and appeared normal. Fingers and heart crossed.

  • Carmerns on said:

    Our baby too was diagonised with mild borderline bilateral ventriculomegaly at the 20 wks scan. Did another scan at 25 weeks, here there was an increase of the measurement by 1mm. Ruled out infections.. Your story gives us hope. We too have stopped with the scans, as the drs. say they cant do anything till the baby is born. Just praying that evrything works out o.k.Now am in the 32nd week.

  • Very touching story.
    My son was diagnosed the unilateral VM at 32 weeks. Left vent 12.5mm.
    He was born on Christmas day 2011, he’s now 8 months old and just fantastic. He sits alone and is starting to crawl.
    Don’t give up hope.

  • A very positve sign on VM..Thank you for posting this…I am 21 weeks and my child has been diagonisd with a bilateral VM of 13mm…A very tough time for me and my family . I would request all to pray and hoping my child will be as beautiful and healthy as Mattea. If sarah i could get in touch with you via email which would help me understand what all i should expect for the future it would be great.

    Thank you all
    and god bless

  • Concerned Grammy on said:

    Sarah, I just read your story and like everyone else have tears rolling down my cheeks. Your daughter is beautiful. I have been browsing different websites trying to find out as much information as I can on VM and stumbled upon your beautiful story! Thank you for sharing!

  • Trixie on said:

    What a lovely story! So nice to see how there are other families with positive outcomes of this condition. My baby was diagnosed at 30 weeks and I must go for weekly biophysical profile ultrasound and non stress test and thank God the condition is remaining stable at 11.4. The specialist I saw one time assured me that he was not worried about it and we just need to keep a close eye to see if the condition changes. There is hope for us, not all VM conditions will lead to a mental handicap but hey if it does all we can do is pray for our babies and love them that much more, God bless you all!

Leave a Reply