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Introducing Madison - wolfhirschhorn.org

Greetings WHS Family,
We are new to the Wolf-Hirschhorn Family Organization.  Our baby girl, Madison Lilliana Seregant was born on July 19, 2015.  She weighed 4lbs, 3.2 ounces and 17 inch long. 
She is now 7 months and weighs 12 pounds and 24 inch long.

Finding out that Madison has been diagnosed with WHS:
Week #34

(ending of June 2015) we went for our routine checkup the Dr. said everything was fine but was concern that I had not gained a substantial amount of weigh that he recommended an Ultrasound the following week I remember that day that early in the pregnancy my OB said if something was wrong you get an additional Ultrasound. He reassured me if something was wrong it would be taken care of. He sent me home and told me stop doing exercise, gave me additional vitamins, and to come back in a week for the follow up.

July 1st 2015 The Downfall:
Week #35:

As I went to my appointment, I felt weird because this was the 1st time ever that I went alone because either my husband or his mom would always come. Getting started with my ultrasound the tech started asking me what was the result of my Down Test; (I was recording the imaging but she paused and asked me to stop) She went and brought another tech into look at my imaging and then they both stepped outside. I could hear them talking in the walkway saying that one of the chambers of the heart was not fully closed. Five minutes later, another doctor came into the room and viewed the imaging, and then they sent me to the OBGYN office were it took 15 minutes for him to come and talk with me. I heard my OBGYN making a consult, but never thought he was talking about me all the time. At exactly 4:15PM, he walked into the room with the nurses. I was already overwhelmed as to why it was taking so long, but deep in my heart I could tell that something was wrong. The OB proceeded to check me out and asked me what the tech told me. I said nothing, but I feel something is not right. He then said: “Well we are very concerned as you are in week 35 going on 36 in a few days and your baby has a 6 week delay in growth; meaning she is the size of a 28 week old baby and only weighs 2Lbs. Then he said that it could be one of many things:
It can be placenta previa: when the placenta does not do it job
That had miscounted the weeks (I replied that I have been coming here since my 2nd week of pregnancy so that couldn’t be possible)
Your baby just stopped growing without any reason.
The OB at this point continued to say: “Due to this we will deliver your baby in next 48 hours and we are sending you to Trident Medical Center to check in for delivery. We will start you on steroid shots so that the baby lungs will develop.” At that point, I felt that I could just run away as fast as I can, and don’t stop until all the pain went away.
By 5:45PM, I was being admitted at Trident Hospital and they looked at all the imaging and decided that due to the weight of the baby, they could not deliver her as their NICU was not for babies that come with these type of complications. They administered the steroid shot and then made a referral for us to be sent to MUSC (Medical University of South Carolina) so that they can schedule a C-section. So I was discharged, and they wanted us to call the EMS for transporting which I refused. My husband was working out of town 3 hours away and could not get to us until 9:30PM. By now I have managed to get myself together, and make calls to everyone and tell them what was happening. The 1st person to reach to us was my sister in-law Celeste. She then helped me check out and drove me to MUSC, as they were waiting on us.

At 8:45PM, I’m already at MUSC, and they started redoing the ultrasound to make sure my baby went from being in position to breached in a span of 3 hours. I was a nervous wreck at this point. The tech at MUSC said that my baby was not under 2 pounds like they previously suspected, but that she was more or less 2Lbs 8oz. I was monitored for 3 days during this time and they administered a second round of steroids. All I could do at this point is pray and keep praying. We were under the impression that we would’ve had a July 4th baby, but that evening we were discharged with referrals to the Women Wellness Center. Since it was the weekend already, all we can do at this point is wait.

Week #36 July 6th to 11th
During our 1st visit to the Women’s Wellness Center at MUSC, we were greeted by a counseling team and then had an interview with Sally Shields, who was the person in charge of our case. She told us the plan which started by getting some blood work and ultrasound and also asking our approval for an amniocentesis and also a FISH prenatal test: (is prenatal test which looks for a few common chromosomal abnormalities typically these are limited to Trisomy 13 (Patau syndrome), Trisomy 18 (Edward’s syndrome) and Trisomy 21 (Down syndrome)) I was asked lots of questions over and over again which resulted in us calling our families to find out more about our family tree and all this information. We were not given any cause or concern of any possible hereditary abnormalities in our families.
A few days passed by and on July 8th we were call by the counselor saying: “We have the result of the Fish Test and we have good news! Your baby does not have any of the common chromosomal abnormalities!” and she hung up the phone. Finally I could breathe and started getting very excited and managed for once in the last few weeks to finish our baby’s room. I went ahead and did all the final preparations, and we had a pregnancy photo shoot scheduled for the weekend…

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July 10th at exactly 6:06pm WHS CONFIRM DIAGNOSIS
I received a call from the counselor and after greeting each other she asked, “Are you alone?” I replied no, there’s someone else in the house with me as my mother in law was there keeping me company as we were just waiting on this call that I wish I never answered. After a few minutes she said: “I just received a call from the lab and they have a preliminary diagnosis.” I replied, “Should I be worried?” She replied, “She can either let me know by phone or to come in Monday to the office in the afternoon.” I told her to tell me what the result was, and get it over with. I am under so much stress that I just wanted to know. I grabbed a notebook and pen to write down what was being said, as my husband was on his way back from out of town and would not be home for the next 3 hours. She continued saying: “The preliminary result shows that there’s a Chromosome Abnormality. There’s a broken chromosome and is the 4P and the upper part is missing.” She was talking, and I was not having an idea of what she was saying while she was talking. I sat by my desk and started to Google the words that I was not quite understanding. She said at this point: “Due to a missing part of the 4p upper part of the chromosome, this makes it falls on the WOLF-HIRSCHHORN SYNDROME” … I said what? I’ve never heard of such a thing! Could you please spell it for me as my primary language is Spanish? I felt like I was being talked to and not understanding a word she was saying…. She asked if I needed a translator at this point? I said no, and then I asked what does this means and what does it affect? She answered by giving me the following list;
1.- Poor muscle tone
2.-Growth deficiency even before birth and that’s your case that leads us to this testing.
3.-Developmental and intellectual Delays could be mild or severe.
4.-Small baby with small head.
5.-Facial: wide eyes, forehead, small nose and cleft pallet
6.-Small kidneys
Most of the broken 4P happens out of the blue, and to finalize it all she said normal people can’t notice that your child has a chromosome disorder.” While she was talking, I was taking notes of what she was saying while tears were falling. She kept asking if I was okay and I replied yes as I did not know what all she was saying. She said that my baby has a syndrome and it was coming with complications that were either mild or severe, but we’ll know more at her birth. She was going to call my husband, but I told her Brandon is driving home and I will make him call you. After she hung up, I cried and sat in silence like I had no feeling at all. I decided to Google and read what was said to me for 2 hours I read and read and I cried.
I started looking at pictures that came up on Google, and at first all you see and read is the worst case scenario… By 9:00PM I had so much information printed that I will educate myself to understand better what it is that my child has. Brandon walked in and I was sitting down crying and he asked what’s wrong. I started to bawl and told him that he needs to call the counselor so that she can tell him as I don’t understand or accept what is happening… While he was on the phone I was feeling angry at my OB because he did not catch this on time and I was angry at myself thinking what I did wrong? I called my family and told them what was told to me, and all they could do was tell me to pray. I even started to disbelieve my faith, because you never expect that for 35 weeks you dream about a perfect healthy child not a broken baby that you don’t know what to expect. After I cleared my head, I started to accept and keep praying and I told Brandon and the counselor my decision. I was not going to give my baby up for adoption as the counselor suggested. I went outside for a walk to try and recollect myself. While walking, I started to feel my baby kicking more and more so I stopped and turned around walking slowly. I just did not want to go home as I knew all this information was so scary but I decided that from that moment I would dedicate my life to care for my baby. How could you reject a baby that is still inside of you? I’ve been dreaming of all things we would do but now we were given different options… At that moment I felt that if I couldn’t care for her, who will? GIVING HER FOR ADOPTION WAS NOT IN MY BOOK!!! I will keep my baby even if means giving up a lot of things both personal and professional! My mind was set to do our very best to give my unborn baby the best life possible within our means and to love her no matter what… I went home and finished her nursery as I felt deep inside that we would be able to bring her home.

WEEK #37 July 12 to 18:
On Monday July 13th, I continued to be monitored and given a stress test. When we were finished, we were called to have the official diagnosis at the counsel office. Brandon & I and his parents were there. We had so many questions that seems like no matter what answer they gave us, it did not change the outcome that we were having a WHS baby. She then took us to the conference room where she had a team that would deliver Baby Madison so that they can make a plan. There was the High Risk OBGYN, who said he would practice the C-section if that was the path to take. While in the conference, they were running an ultrasound in real time so that they had a plan upon delivery. The Cardiovascular Pediatric said he will get her prepped for surgery once she can do an ultrasound of her at birth. The Pediatric Surgeon said he would close her stomach because in the ultrasound, it showed that her intestines were out and that the stomach was not fully closed. The Pediatric Nephrologist and Urologist said that once she was born, they would make the decisions whether she was going to have surgery or what would be the options. We were still in shock and now we are making plans for her arrival without letting us know what to be prepared for…Afterwards, they told us to don’t shop for anything else because we would not know the outcome.
The same day after the meeting, they said that they can do the C-section, but luckily I had breakfast that morning and we then rescheduled if for Friday 17 of July at 8:00AM At this point I just wanted my baby to be born so that I would be able to see what were the challenges we were going to have to deal with.
July 17:
I am a nervous wreck and I want for this all to be over with… They started preparing me for the C-Section but the baby was in position once instead of breached. So here’s comes a change of plan; they said that they would induce her, but if she was in distress, they would do a C-section… I was in labor for 2 and half days but finally Madison was born on July 19th at 1:27AM!

WELCOME TO THIS WORLD BABY MADISON:
As Madison was born, all the thoughts that’s going through my mind was would she survive? Will she be okay? But those thoughts went away when I gave that final push and she came out! She just stared at her Daddy and then they showed her to me for a total of 2 seconds and I felt instantly in love with this tiny little girl that I am able to call my daughter! The team of doctors took her to the surgery room to run all the tests they needed to. In the middle of that process her oxygen levels dropped and they had to resuscitate her, which lasted for a couple of hours, before she could breathe on her own.
All the tests that were ran came back, and they said that at the moment she would not require any surgery and that she would be monitored for a couple of days to make sure she could be fed and that we would be able to take care of her. She was then taken to the NICU.

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As for me, they put me to sleep which lasted for a total of 6 hours and then I woke up and wanted to see my baby! We started running around getting more tests done as we were not clear as to why she had this syndrome. We got our blood drawn for a genetic testing of the parents to see if one of us carried the reason she had the syndrome. While Madison was in the NICU, they said that she had jaundice so they had to put her under a UV lamp. All kinds of doctors came and checked on her and made all these tests, but her most surprising doctor was the Genetic Specialist. When he came to her crib, he asked “Are you sure this is the baby?” Everyone in the unit was aware and expecting a baby with all the WHS features and complications after birth, but all we can say is, “Do you believe in miracles?” As we were prepared for the worst expectations, we were blessed with the best.
Early Monday morning on July 20th, I was finally able to hold my little girl!!! I have never seen such a small fragile-looking baby, but as she laid there all I can do is stare… We were just waiting on the results of all her labs and tests. I met the lactation consultant and she had me stressed out about pumping because Madison will not latch. They started saying about a feeding tube as an option, but we said will wait and try… By the 2nd day of her life some labs came back and the result of her bilirubin Jaundice level were high about 12% while she was being given IV fluids. On the 21st I was discharged but because I was so emotional, the hospital let me stay for 2 extra nights as our baby was still in the NICU…
The following test were practice while in the NICU:
Test:
Chest and Abdomen: Evaluate tube placement. Multiple congenital anomalies (we were expecting a GI Feeding tube before discharge at this point) There is no evidence of pneumatosis, free intraperitoneal gas or portal venous gas. Structure overlying the left lower abdomen/pelvis compatible with prominent umbilicus/hernia/small omphalocele seen on physical exam. Bones appear normal. Heart murmur.
Hearing Screen: The result is that she pass the right ear and partially deft in the left ear.
RENAL ULTRASOUND: INDICATION: Multiple congenital anomalies. Evaluate kidney structure. Term infant, small for gestational age. FINDINGS: The right kidney is small for age measuring 3.1 cm and demonstrates normal echogenicity. Scattered 1 mm cysts throughout the renal cortex. There is good corticomedullary differentiation without hydro-nephrosis, nephrolithiasis or perinephric free fluid.
By the 3rd day, my milk finally started to come down but she still wouldn’t latch or take the pacifier. At that moment, the nurses called us and asked if we would like to wait before trying to feed her with the bottle as the lactation consultant was refusing to let them try the bottle. At that point I just wanted my baby to try and see if she would be able to suck that bottle so they started and she sucked a total of 10ml in her first feed and she just got so tired from it! The doctors recommended that she remain in observation for the next 24 to 48 hours until they were sure that she could be fed and that I would be able to take care of her.
Surprisingly, early on July 22nd she was able to drink 25ml and then an hour later the same amount! It was around 1:30PM when they told us to prepare ourselves as we might be going home with our baby!!! We had lots of running around to do and a couple of calls to find the right Pediatrician! After our friends and family had given us some recommendations, we chose one and set the follow up appointment after we were discharged. MUSC gave us a list of outpatient appointments to follow up with before we were discharged. Many of those specialists were: 1.- Cardiologist 2.- Nephrologist 2- Genetics Specialist 3.- High Risk Pediatrician 3.- Pediatrician Surgeon 4.-Audiologist 5.- Oculist 6.-Urologist and 7.- Early interventionist.

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From the time that I got to hold my dear Madison in my arms, I promised her that I would always care for her, love her, never deny her, and most of all, give her the quality of life within our means.
I will update later on how life has been for us since we got her home…

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Kenia & Brandon

 

12 Responses to Introducing Madison

  1. Brandi Malone says:

    Welcome to the family! First I must say how absolutely precious baby Madison is. I actually haven’t been able to read your whole story, but I will. I was excited to see Trident hospital and MUSC, that means you must live in the Charleston area. We live in Goose Creek and my son is 13 years old. I would love to meet y’all sometime if you’re up for that. I know how overwhelming it is when you have a new baby with this diagnosis. I also know it can be very overwhelming to meet another WHS family. I just had to reach out. This is an awesome group and if you ever have any questions at all or just want to vent, don’t hesitate. Please feel free to contact me if you’d like! I look forward to meeting you if that’s what you want.

  2. Shirley Bidnick says:

    Congratulations on the birth of your lovely baby girl Madison. Thank you for sharing your story with us. Although your health care team had to be prepared for the worst case scenario, their approach created a great deal of stress for you to deal with. It forced you to deal with the fact that Madision was ‘different’ than the baby you thought she was. I am so glad you quickly realized ‘different’ is okey and that you love her and are committed to her just the way she is. Dealing with so many specialists can be frightening, but you need to work with them to give Madison the best chance to be as healthy as she can be. Madison looks so peaceful and pretty in her ‘little mermaid photo’. I am sure she is wondering what all the fuss is about. Life with WHS is ‘different’, wonderful and fulfilling at the same time. I hope you post another update soon.

  3. Melissa Sarnjai says:

    Thank you for sharing your story! And welcome to the WHS family 🙂

  4. Keely Absher says:

    Wow! Congratulations Kenia and Brandon. It took me a few days to read this, and I have to say…your story took me on an emotional roller coaster ride. It truly brought me back to our own beginning of the WHS story. You are so brave and strong. Madison is such a lucky little girl to have such loving, wonderful parents. You are truly the God-picked parents for her. She is beautiful and will amaze you in so many ways. As you are already aware, it’s not easy, but it is worth it. Most of the best things in life are not easy. I am so glad to have gotten to know Ksnia over Facebook and hope to meet you both some day.

    Welcome to this unique and wonderful family.

    Thanks for sharing this and I look forward to more updates in the future.

    Sincerely,

    Keely Absher (Paige’s mom)

  5. Anitra says:

    What an emotional and stirring chronicle of your experiences, so far. Thank you so much for sharing all of your thoughts in such detail. It was such a real and touching account. I’m sorry for all that you are going through. Our scenario was somewhat different, as we didn’t find out until Elsa was born that something was wrong. The time before “knowing” is precious in hindsight, isn’t it? I think you’ll come to find that you will have a before-Madision time, when you look back at your life, and an after-her-birth time, when your life took off in a different direction you never could have predicted. Our Elsa is now 4 years old, and I think all the time of how purposeful life now feels. For me, knowing that I have such an important responsibility, to give her everything she needs, I feel that God is finding a way to use me in ways I couldn’t have imagined. You know how people say we only use 10 percent of our brains (I think that is the stat)? I feel like having a child with special needs is like discovering untapped things within your own human potential, like that other 90 percent. There will be days when you feel completely tapped out and not enough for Madison. And there will be other days when you think, “Wow, God is really doing something here.” And you’ll be blown away by how rich your life is. I think all of us in the WHS community have fallen in love with Madison. Please come to us often in your journey. And if you’d like to be added to the WHS location database, please email me at anitraschulte@gmail.com and share your name and city of residence. Sending my very, very best to you and your husband and BEAUTIFUL Madison!!

  6. Madison says:

    Hi Anitra,
    Thanks for your kinds words of encouragement.
    I will send you an email with information for the WHS location Database.
    I will read more about your beautiful Elsa’s journey to learn about you all.
    thanks once again.

  7. Madison says:

    Dear Keely and Baby Paige,
    Sorry our story got you emotional… But I just needed to express each detail I could recall.
    Thanks for being our virtual friend on FB and that we are able to interact/exchange our baby girls health issue and being able to share with someone who understand what we are talking about is always nice to have.
    Your Journey is also an inspiration to our family specially since our girls are only months parts Paige is such a beautiful little girl who look very happy and that’s because of that caring loving heart of you and her father and sister. You all are doing and amazing job and we always keep her in our prayers. Madison & Paige are our God sent Angel to love and care for.

    Hugs,

    Kenia

  8. Madison says:

    Thanks Shirley,
    You are right at least I had that opportunity even if was very stressful to accept and that being Rare and different was okay. I admire all the wonderful WHS moms who find out latter about their kids diagnosis; but I am also graceful we found out when we did to be able to cope with it.
    Those first weeks and even 3 months which I will soon update were nerve-wracking but now that she is 8 months things are more stable and we are more confident that she will do good.

  9. Madison says:

    Miss Brandi,
    Thanks so much for reaching out to us I just call Brandon at work and told him “Baby there’s a WHS kid in our are” He is also exited… We live in Summerville off exit 194 so we are very close and will take you in offer to meet you and you 13 old son.
    This is my cell 843-513-9276

    Att.

    Kenia

  10. Madison says:

    Thanks

  11. Paola says:

    Hi!

    Thanks for sharing your story. It is so touching and made me cry thinking back on what we went through. I also have a baby girl with WFS. We found out after birth. She will be turning 1 on the 17th. It has been very tough for me, but I have finally come to terms with this reality. So slowly, I have been looking online to see what organizations are out there. Just praying to God that my Alexia remains stable and no more hospital visits are required. Stay strong mamma!

    Big hug,

    Paola

  12. Madison says:

    Thanks for your kinds words the only way we will be able to help our little one is coming to terms and accepting it.
    we must embrace the good day away from the Hospitals and always keep in mind we are our babies voices,
    I hope Alexia and Madison health be stable also.

    Best regards,
    Kenia

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