Some thoughts on the birth of their son: A Father and a Mother's viewpoints

And below more Birth Stories:

My name is Bronwen and I am married to Bart. Our son Brodie was born in November 1995 with an incomplete unilateral cleft lip.  These are just a few thoughts on our birth experience.

Brodie was born (forceps delivery) after a long labour that nearly saw me having a c-section. When he was delivered the specialist gave him to me, and amidst the shock of actually seeing this baby for the first time, I looked down at him and wondered why his lip looked "hooked up" and why it wasn't going down into place. Then for that one horrible moment I realised that it wasn't going to and that he had something wrong.  My instant feeling was that this was not my baby, which looking back now makes me cry. However, these feelings subsided as I saw Bart marvelling at his new son and that he was obviously totally in awe.

The specialist saw me upset and decided to call the paediatrician (even though it was 1am) in to see Brodie and I suppose to check out if he had any other problems (which there weren't).

During the rest of that night I cradled Brodie in my arms, telling him that I loved him, which I did, but I think that I was also trying to convince myself.  At midday the following day we transferred hospitals for the rest of my maternity stay.

The hospital staff were very good with Brodie and most didn't mention his lip, although there were times when I wished they would just ask me how I was feeling, and somehow acknowledge my pain. We saw the plastic surgeon the next day, which was good as at least we then knew what we could expect in the coming months.

Over the next few days I think that I coped quite well with it all, Bart was much stronger than me and it didn't seem to bother him much at all that Brodie had a cleft. Initially I found it very hard taking Brodie out and getting used to people looking at us. I also made sure that I told everyone before they visited us, I think I did it so that we could be spared the look of shock on their faces, and the unsure comments. All our friends and family have been great, nobody saw Brodie as being any different.

Since then I've had times when I've been really upset and have asked why it happened, but am now coming to the point where I can see that it was "just something that happened" and that it could have been worse and that Brodie will grow up to lead a very normal life.

I hope this is of some use to someone,
Bronwen

How many thoughts can one have in about 10 or 20 seconds?  When my son was born, with a 'surprise' bilateral cleft lip and palate, I had a lot, some that I am proud of, more that I was ashamed of, until I realized through Widesmiles how normal these thoughts really were.  I have never tried to put them on paper, but here we go:

...I know that they are supposed to look funny when they are born, but, but , but... SOMETHING IS WRONG WITH HIS FACE...

... It doesn't matter, it doesn't matter, I LOVE HIM!!!

... This must be a harelip (had never seen one before, and certainly did not know the term cleft lip)...

... Will I be able to nurse him?

... S--T, If I can't nurse him I won't get the additional four weeks maternity leave... (In the country where I live, and additional four weeks are given to mothers who nurse their babies)

... Come here sweety, it doesn't matter, we'll take such good care of you, YOU ARE MY BABY!!!

... Oh boy, this looks so ugly, will they be able to fix this in the next few days, before we leave the hospital PLEASE...

... Oh boy, what am I going to tell people?

... Sweet little thing, you are so helpless, I will protect you, don't worry, we will take care of everything...

And everybody else?  A big bravo to the obstetrician who, at the same time I realized that something was wrong extremely calmly said: "he has a small anomaly with his lip, it is nothing serious, this is something that can be very easily operated."  Other hospital staff? Very professional, did what they would normally do, I didn't notice really.  And my husband???  I had all forgotten about him!  I only heard later: he had the shock of his life and was taken to lie down for a bit, while the anesthetist fed him sugar!  He had not thought of a cleft lip, and thought he saw a fully handicapped child.  After a minute though, he felt like a fool, lying there next door, and he realized his FAMILY needed his support, and he came back and has been the most wonderful dad ever since!

My birth experience with Elizabeth:

Elizabeth is my third child having been through pregnancy and delivery two other times made me think I was prepared for all. My two sons are Non-CA although Andrew was born with a prolapsed Mitral Valve and has been seeing a Pediatric Cardiologist since he was tiny.  I developed High blood pressure in the third trimester of my pregnancy with Elizabeth as I did with the other two.  This was monitored closely (twice a week to the CNM) and frequent non-stress tests and bed rest..  Elizabeth was due on April the 5th. Easter that year was the 3rd of April. A week before Easter, Elizabeth’s heartbeat started to skip beats about every two minutes or so. Due to this and the High Blood Pressure, the CNM in consultation with an OBGYN decided to induce Labor on April 4th.  I was admitted to the hospital Easter evening and induced 9:00am on April the 4th.  After extremely painful back labor, 3 ½ hours later Elizabeth Lucille Lindsay was born at 12:55 pm.  Unlike my first two babies who were quite calm after birth, she cried non-stop for over 4
hours.  I tried to nurse her but she wouldn’t latch on, at this point we had no idea of the submucous cleft, bifid uvula or the Pierre Robin. I was nursing her, but not very successfully, she would suck for 2-3 minutes and then fall asleep, I didn’t get very discouraged because I thought she might have some of the Demerol that they had given me during labor still in her system.

That night Elizabeth had a very difficult night, she had problems breathing and kept inhaling and coughing up mucous.  When I pushed my buzzer at about 2:00am when Elizabeth inhaled so much that I thought she wasn’t breathing, the night nurse came and said "Oh she’s fine "(she acted like I was just a paranoid mom) and also said "She just needs some water" and then she proceeded to give me a bottle of water to feed to Liz.  At this point I couldn’t get her to stay awake to nurse much less give her a bottle of water. Of course when I tried the water all she did was gag and cry.  How I wish there had been a nurse on duty who was with it and had helped me get to the bottom of the problem.  It was a long night, and  I slept very little because I was afraid she would choke or stop breathing.

We were discharged from the hospital the next day (my request),  the pediatrician on-call did the newborn exam but NEVER opened her mouth and looked in. She was still nursing for less than 5 minutes and then falling asleep, we had no idea of the cleft at this point.  Due to our early release
from the Hospital (less than 24 hours after birth), we made an appointment for Elizabeth to be seen by our Family physician a few days later.  When we took her in for her checkup, she was 4 days old, I still was struggling with nursing her but it was getting better, she’d stay awake for up to 10 minutes of nursing now. Not great but better than before!  Our family physician discovered her bifid uvula and submucous cleft, we were shocked and really had no idea what this entailed…in fact when he said "her uvula is cleft" , I said "her what?". Ignorance abounded!  He referred us to a plastic surgeon in our area, and being a new patient it took over 4 weeks to get in to see the Plastic Surgeon. He explained better and referred us to see the Cleft-Palate Team in our area which he is a member of.  He also gave me the name of a woman who supports families with cleft’s  (all three of her children had clefts).  She contacted me that night and I finally got tons of
answers to unasked questions, especially about the nursing.  I continued to nurse and supplement with a bottle (Mead Johnson nursers for Cleft Palates). I finally found out that most CA kids can’t nurse or they fall asleep quickly while nursing because it’s such hard work to get anything out of mom.  It was such a relief to talk to someone who knew what I was going through! I felt terribly guilty about Elizabeth’s cleft, was it my fault?  What did I do wrong?  It really helped talking to the Geneticist at the first  Cleft palate team meeting, she helped me reduce a lot of the guilt felt. They finally diagnosed her with Pierre Robin Sequence at that first cleft palate team meeting. She was 6 months old.  Now Elizabeth is a happy two year old. She had her palate repaired at 27 months and receives  two hours of speech therapy a week. She has also had tubes placed in her ears since she was 16 months old.  She says she wants to be a Doctor when she grows up!

Here is our story about pregnancy and birth...

It has been strange for me, because I had not planned to get pregnant, it was not exactly the best timing for me, I was about to get divorced from my first husband and had already fallen in love with Rob, and then ooops (first the miscarriage and then one month later, pregnant with Paul and we thought we were being careful....and to think I am in the health field!) I had many doubts through my entire pregnancy about being a mother. I was afraid I would be terrible at it. I found out Paul was going to have a cleft when I was 6 months pregnant, and yes, the first few weeks were very hard on us, but we had that time to prepare for his birth and his "condition".  I still think the hardest part was after the ultrasound that confirmed the cleft, the Dr. rattled off all the statistics of other things that are common with clefting, 2 or 3 of which can be fatal....that was hard! He told us not to worry (yeah right!) and that we wouldn't know until a month later when he did a second ultrasound to check the amniotic fluid.  He said I could have an amnio, but I decided against it.

Anyway, then next ultrasound was ok and everything else appeared normal.  The end of my pregnancy was rough, because of swelling and high BP. Labor was nothing like I expected, you see, I am always a worse-case scenario kind of gal, and I had it all cracked up to be the hardest thing ever and was scared to death, but it was not as bad as I expected. It was 18 hours long and no drugs until the last 3 hours before he was born. Not that I wanted it that way, mind you, my motto all through pregnancy was "bring on the drugs!!" I had gotten lost in the shuffle, and they made the last priority on our floor because 5 other women were farther along in labor than me!

Oh well, anyway when Paul was born, it was a very strange feeling.  I have to say that at first I had NO idea what to do or how to do it, especially feeding, but from the beginning, it felt like this was what I was supposed to do.  I would have never thought I was the mothering type, but I have to say, it is the best thing that has ever happened to me (besides Rob).  I guess my love for Paul started out very strong, maybe because I had just had a miscarriage, and I realized how wonderful and very fragile life is.  My love has grown and grown.

Thanks for letting me feel comfortable enough to share this here!

Beth and Paul who finally slept the whole night through last night!!!!!!

Sheldon was born with a bilateral cleft lip and palate. His cleft was a real shock to us; we were not aware of it although I did have an ultrasound at 37 wks.

All throughout my pregnancy, I was living with my parents, along with our oldest son. My husband is in the military and was stationed overseas at the time. Luckily, he was with us for 2 weeks when Sheldon was born. He left for another assignment 10 days later, though and those 10 days were a
complete mess for all of us.

Sheldon would not eat when we were in the hospital.  I had a lactation consultant (nurse) there to help me learn to breastfeed Sheldon.  Although I was given a lot of reading material that supported the fact that I could breastfeed him, it just did not work out.  I ended up pumping milk for about 2 wks. before it just got too tiring and not worth the effort.  I knew it wasn't me, so to speak, because I had successfully breastfed my oldest son. I gave it up with a lot of guilt and bad feelings.

Also, while in the hospital and beyond, no one had any idea of special bottles/feeding devices designed especially for cleft-affected children.  I ended up trying almost every nipple on the market; going through a lot of trial and error cutting different size "X" (cross-cuts) to see what worked. Frustrating, very frustrating.

A social worker did visit us once -- she also had a cleft-affected son. She showed us pictures of her son and listened to me vent a little. Other than that, I had no one else to talk to about the specifics of feeding, dealing with my emotions, dealing with people staring, etc.  It was a lonely feeling.

I was very scared in the beginning.  I knew nothing at all about clefting. All of the information the doctors told me about his future (bone grafting, being more prone to ear infections, possible dental/speech problems, etc.) was just so overwhelming.

Since then, I've gotten a lot more information via our computer.  And a lot more support -- for all the different issues that concern us.  We're still all very new to all of this clefting stuff, but now I feel more confident that there's help out there and others who understand everything I'm going through.

We're from Brisbane, Australia.  Kerri is an auditor, and now a full time wife and mother.  I am training in Psychiatry.  Our first and only (so far) child is Emma, born on February 6, 1996.  She has an incomplete bilateral cleft lip, and complete bilateral cleft palate.  Her lip and palate were repaired at 3 and a half months of age. She cut a tooth at ten days of age which was removed at operation also.  A week after the operation she cut two teeth through her hard palate! They were removed under GA two weeks later. A recent hearing test demonstrated a severe hearing loss in the right ear, functionally normal hearing in the left, but fluid behind both eardrums. She therefore had grommets inserted in both eardrums two weeks ago.  The next surgery may be a lengthening of her columella at about 3 years, or if she doesn't need that, a bone graft to the maxilla at about seven.

The cleft was a surprise to us, with no family history, and a "normal" 16 week ultrasound scan. Kerri had a pretty good labour (if any are good - I better watch what I say).  When the obstetrician put his finger in Emma's mouth he said "There's a little problem here guys."  That's NOT what you
want to here from your doctor at any time, let alone in the delivery room. When I saw her I remember trying to look happy when I actually felt angry. At the same time I felt angry at myself for being so selfish, because I wasn't thinking of the difficult times Emma would have to go through, but I was just angry because this had happened to me.  Within the hour we had been referred to a paediatrician who attended, examined Emma and spoke to us (still in the delivery room) giving us a very detailed account of what lay ahead and the possible complications.  When he left, Kerri burst into tears. A medical student had watched while our paediatrician examined Emma.  He asked my permission and I didn't feel I could say no because I had made similar requests when I was a medical student.  I felt so angry at him as he asked our doctor questions like "do you get such and such in 'cleft palate'".  I thought "this isn't a 'cleft palate', this is my daughter".

Our family and friends were great, and so was Emma.  We both were able to accept things and stop feeling sorry for ourselves within a couple of days. A visit from a member of CleftPALS (Cleft Palate and Lip Society) with her cleft-affected child was really helpful.  We also had the experience of the hospital knowing little about cleft-affected children, particularly feeding.  After the CleftPALS lady visited and left some literature, Kerri knew more than the hospital staff about that (or at least it seemed that way).  But I don't know if there's anything wrong with that, because as a doctor I know it's very important to be able to learn from your patients.

The hardest thing for us has been feeding. Emma was unable to suck effectively until the age of six months. Kerri expressed breast milk until Emma's surgery in the hope she would then be able to breast feed. Emma did indeed take to the breast like a duck to water, however she didn't get much milk and lost a lot of weight.  After trying breast shields, supply lines, different positions, etc. we decided to change back to bottle feeding.  It sounds simple describing it here, but it involved a lot of heartache.  We think the teeth coming through the palate didn't help.  Emma still seems to have a defect in her palate as food comes out her nose when she eats, and it irritates her, making her sneeze.

The next hardest thing has been the succession of cleft-related problems. Once the repair has been done you sort of expect it to be mostly over. But other things keep cropping up, like palatal teeth and hearing problems. There seems to be a never ending round of doctors' appointments and hospital visits.

At the time of writing this Emma is eight and a half months old, and doing fine. She has regained her expected weight and is growing well. She is crawling speedily and pulling herself up to stand on the furniture (and then falling over and bumping her head and crying).  She says Nananan... ,
Mamama... and Dadada... (however I'm not convinced she knows what it means). We are very happy with her repair and think she looks beautiful (acknowledging we're biased). She has a happy nature and is an indescribable joy to us.  God could not have given us a better gift.  Have I
crowed enough?

Chris (& Kerri) May

We are Cindy and Dave.  We have four children and three of them were born with clefts. I am divorced from the older three children's father. Soon after Dave adopted the children , we found out that I was expecting another child.

Sarah, the oldest, was born on December 14, 1989 after a very difficult labor and delivery. Their were doctors on call because she was under stress. The doctors rushed her away immediately.  I had no idea what was going on.  It seemed like forever before anyone came over to say anything to me.  My OB approached me and told me that she was born with a birth defect, and that it was called a cleft lip and palate.  It could be repaired very quickly, and at the time that was all that mattered.  He said that she appeared to be healthy. Finally, Sarah was brought over to me so that I could hold her.  I thought that she was the most beautiful baby there was.  I was scared. I had never
seen a cleft before, although I  had heard of them because I had two cousins born with cleft palate.

Before long I found out that I was  pregnant again, and of course I was scared that this baby too would be born with a cleft.  At eighteen weeks gestation I was sent to have a Level Two Ultrasound.  I found out that day that the baby I was carrying would also be born with a cleft lip and  palate. Maria was born on June 20, 1991.  Due to the fact that I knew she would have a cleft I was prepared to take care of her. I feel that I was fortunate to have found out before she was born that she would be cleft affected also.

My next child, Andrew, was born with no abnormalities.  I also had the Level Two Ultrasound with him.

When I became pregnant with Branden, I really thought that he would not be born with a cleft.  I had been informed by a genetic counselor that the clefting on my girls was probably due to a combined factor with my ex-husband. I changed doctors with this pregnancy, so he also sent me to a new geneticist. At sixteen weeks gestation I went to see her, and during the ultrasound I saw the cleft myself before she ever said a thing to me about it being there.  I was devastated that the baby I was carrying would be born with a cleft too. I was mad at everyone - the genetic counselor that had wrongly told me that it was a combined factor with my ex, mad at the geneticist that did the ultrasound, mad at myself mostly though that I  had not given any thought to the fact that this baby had a very good chance of being born with a cleft.

I went on to have several more ultrasounds during my pregnancy. I found out at twenty weeks that I was having a boy. It  took no time at all before I was very excited about this baby coming into our lives.  It just hurt that my baby would be born with a cleft.  When I found out that he was a boy, it was kind of a relief knowing that he could possibly grow a mustache later in life if he chose too.

Branden was born on August 19, 1997 by C-Section due to a breech position and other problems that would have made it impossible for him to be born any other way.  He was born with a bilateral cleft lip and palate.  His two sisters were born with unilateral cleft lip and palate, so this was a little different for me.

If I had the choice of whether or not I wanted to know, I would choose knowing before hand any day over being surprised at birth.

Here is a Story about how I found out:

I am married to a wonderful man who was born with a Bi-lateral Cleft lip and Palate, so my situation may be a little different. I knew there was a chance of my children being born with a cleft. But after my oldest son was born without a problems I had kind of forgotten about the possibility with my second child. I went in for a sonogram at 18 weeks and by the time I got home from that appointment there was a message to come back for a follow up sonogram the next day. So scared and uptight I went back for again and it was then they told me about the bilateral cleft I was horrified to say the least, this wasn't  possible! I spent the rest of that pregnancy angry at the world. My husband took it personal unfortunately. But Colin was Born on November 26, 1997 a bouncing healthy bundle and I wouldn't trade him for anything he has taught me about life itself.

But my tale takes a twist. I found out June 2001 that I was pregnant, not planned, I waited and prayed for 20 weeks that I would not have to go through this again, I went through one sonogram at 18 weeks and they could tell me nothing other than the best guess was that it was a girl, Okay so half of my wish had come true, after two boys I was going to get my girl. I went back at twenty weeks only to have my world shattered by another bilateral cleft.  How can this be, How can God be so cruel. I am due March 26, 2002 So I still can not share the experience of her birth right now.

Life's too short, You've gotta live it to it's fullest!!

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