Any other mommys or mommys to be expecting a cleft baby?

[stir crazy]

Hi ladies a little bit about me, im 33 years young lol married with 3 children, dd 10,ds 6,(from previous relationship),and ds 2, and 21+2 with another little prince with the husband. When pregnant with my 3rd they found out at 20 week scan he had cleft lip, im not going to lie,but i was gutted i sobbed like a baby.to my horror We was offered an abortion not once but twice, my reply was,are you crazy...because of a cleft lip!!! He was my mirical baby you see,i had a large grade A1 ovary tumour removed along with tube after my second child,was told my remaining overy was no good and the chance of having more kids was slim to none! Yet here he was loool. He is now a happy healthy cheeky 2 year old. Now fast forward 2 years and here we are again with our rainbow baby at 20+2 another little boy who also has cleft lip! We got a scan on monday at fetal medicine for a more thorough scan which will check if he has his palate. We hope this is the case as feeding will be a little easier.
Is there any other mommys on here with a clefty baby or expecting one? Hope all you ladies are well,thanks for taking time to read my essay lol
Xx

 

[stir crazy]

 

[MKaykes]

Hi stir crazy! We just had our level 2 scan at maternal fetal medicine yesterday and confirmed a cleft lip and palate. I'm still processing the news. We have a couple soft markers for genetic disorders so there is a risk we have more going on but are declining any additional testing at this point.

I've cried a bit, but realize that it isn't the worst news we could get. I'm just already hurting for my little girl. She's our first so we're getting a taste of being parents.

 

[stir crazy]

Hi stir crazy! We just had our level 2 scan at maternal fetal medicine yesterday and confirmed a cleft lip and palate. I'm still processing the news. We have a couple soft markers for genetic disorders so there is a risk we have more going on but are declining any additional testing at this point.

I've cried a bit, but realize that it isn't the worst news we could get. I'm just already hurting for my little girl. She's our first so we're getting a taste of being parents.

Hi there ×, first of all congratulations on your little girl xx. What cleft has she got if you dont mind me asking. My youngest and this baby have unilateral left sided cleft lip. I hope your feeling ok,if im honest when i was pregnant with john-paul i worried till the day i went into labour. The questions that went round my head over and over...how will i cope? How can he feed? What will he look like? Will i have that instant bond? What will other people think or say? But all those worries disappeared the second they placed him on me. I actual forgot about the cleft lip!!! I was so lost in his blue eyes my husband pointed out to look as it wasnt that bad loool. He was 5lb5oz born and done really well with his feeds,we had to use squeezy bottles. He suffered with wind and mild reflux. This time round i have just 1 question in my head and that is if his palate is intact. I will find out on monday and also how wide the cleft is. J.p,s was 5mm wide so i have something to go by if that makes sense. We was offered genetic testing with j.p. but turned it down and we will do the same with this little one too. Look at me writing an essay again lol (sorry) if you ever need to chat or got any questions you'd like to ask then fire away lol
Big hugs to you xxx

 

[MKaykes]

It's great to connect with a momma whose been through it! She has a unilateral cleft on the right and they are pretty confident into the hard palate but won't know how far or wide in the palate until birth.

My biggest worries are feeding and having to send my baby in for multiple surgeries. We've got an appt in a few weeks with the surgeon to go over everything. On one hand it seems early since we'll only be about 25 weeks, but they said it gives parents time to process all the information.

I also worry about what people will say/think and if she'll be teased if she has a scar as she grows up, or any speech issues.

Your little one looks so cute, before and after repair! I read on another board a momma say she actually missed the cleft after surgery.

 

[stir crazy]

Hi, we dont see the sergeon till a few weeks before his first opp. On monday we will be referred to the C.LA.P.A. team who will come out to have a chat and go over everything. Then thats it till my son is born,the lady from the C.l.a.p.a. team will come see the baby at hospital before we are sent home confirm what cleft he has and tell us what bottles and teats to use. She will regularly pop in for a visit make sure baby puts on enough weight for the opp. Im in the uk so his first opp to close the lip will be around 12 weeks old if his palate is affected depending on how bad it is then that opp would be around 12-18 months. With john-paul he has what they call a gum knoch so where the gum line joined at the front its slightly wonky so his 1 tooth hasnt come down all the way,he will need his second opp when his 8-11 once his big teeth are in. The opp are worring but looking back it broke my heart not been able to feed him before the opp as he had to be starved, my he did scream and the sleeping gas they was the hardest part for me. The opp it self was pretty quick. He looked so different after he was pumped up with pain killers but still managed to smile,it was a different smile, a new one i had to get use to,my how i miss those wide gappy smiles lol. His scar is hardly noticeable now at first it was red and looked like a little lightening bolt so i nick named him flash lol. As for what people say ive only come across a couple of immature adults who had issues with me but they decided to take it out on my son all over facebook. But hey i feel for those idiots!! They cant fix an ugly personality can they
Xxx

 

[MKaykes]

How are things stir crazy? Did you confirm if it is just the lip?

We had another scan this week and verified the palate is involved and a unilateral cleft in the right.

We met with one of the options for surgeons (we've got I think 5 in our immediate area to choose from). I knew we'd have the surgery for the lip and palate, but didn't realize all the additional things involved. Likely tubes in the ears as an infant and toddler, speech therapy, a lot of dental work and likely dental surgery as well as rhinoplasty during adolescents after he's done growing.

And, we found out that she (we were told at our first scan it was a girl) is a little boy! Lol, so glad we figured that out now and not at delivery.

 

[stir crazy]

Hi there,no way!! Congratulations its a boy lol. To be honest the scan was a total waste of time,baby wouldnt move his hand from infront of his mouth. They managed to get 2 views but they wasnt sure. They see a slight gap but there dont know if its a gum knoch like john-pauls or a cleft palate?! So wont know now till his born. We have seen the cleft palate team already and decided to prepare ourselves for feeding a baby with a cleft palate. To be honest i thought it would be different bottles and teats but its exactly the same ones we used with j-p. If the palate is involed they do worry about hearing and speach but here they will test his ears before we come home from hospital when he is born. The speach problems will be a new one to me as j-p didnt need speach therapy. We turned down genetic testing again,i dont see the point as it cant fix anything and it will just tell us the chances of having another cleft baby and the chances of the 2 boys passing it on to there kids. But we believe that it should be the boys choice when they are older if they want to know or not. The only difference really with the palate been involved is an extra opp at 6-8 months to close palate,possible speach problems and possible hearing issues but all of those can be put right 😊. I know full well im only this calm and not stressing out over it all is because ive been here before. Hope you and your little boy are good xx

 

[MKaykes]

Hi stircrazy! How's your pregnancy going? I've only got 5 wks until I meet my little cleftie!

Curious, what bottles do they recommend in the UK? Are you going to try to breastfeed?

 

[stir crazy]

Hello, im doing good thank you, been up and down hospital for extra growth scans as i have small babies, im 35 + 4 today and baby is about 5lb2oz. My due date is august 15th but i went 2 weeks early with my last 2 pregnancies. Ive been advised to use the mam squeezy bottles again. We still dont know if his palate is affected till his born,i wont be breast feeding. I did think about it with john-paul as his cleft lip wasn't that wide,but i noticed they dont tend to push the breastfeeding with a clefty!!! this pregnancy has flew by,kind of happy about that as ive not got much water so i feel every movement baby makes and it hurts lol. Hope you and baby are well. Roll on D day lol xx

 

[stir crazy]

The bottle and teats ill be using xx

 

[stir crazy]

So just a little update, my little man decided to make an early appearance at 36+6 weighing 4lb14oz. He has cleft lip and pallet but is feeding really well. Hope all goes well with you and your little one. Xx

 

[MKaykes]

Funny that we were close in due dates and delivery dates! I know you saw my update, but for anyone else who may end up here in the future, our little guy made his entrance at 37w2d due to my blood pressure.

We tried Dr. Brown specialty feeder bottles but switched to Haberman (Medela specialty feeder). He's doing better every feeding but is being kept in the NICU and topped off by a nasogastric feeding tube. Other than learning to use the bottle he is perfectly healthy. Born weighing 6lb 11oz. His cleft is a complete unilateral right lip, right unilateral hard palate and bilateral soft palate.

Congrats stir crazy, we'll have to keep in touch as surgeries approach!