Tanisha`s Story

Our daughter Tanisha was born on the 11th of December 2001 weighing 4lbs 12oz`s.

She was diagnosed with the Gastroschisis condition at my partners 12 week scan at the natal ward within Sunderland General hospital. Before the diagnosis came it was just another scan which you tend to look forward to especially as a new parent, as I was going to be.

My partner already has two other daughters who underwent normal pregnancies and deliveries without complication, so when we were called back to the hospital and Gastroschisis was diagnosed it came as a huge shock.
Immediately we both started asking questions,

  • How has this happened?
  • Is it genetic?
  • What have I done to cause this?

You come away from the hospital wondering if you, your partner and ultimately your baby are going to get through this, all of these concerns we know now are perfectly natural, they are a natural human response when you have just received the worst possible news as a parent to be.

Every parent all over this planet only ever wishes for a healthy baby so dealing with the shock of Gastroschisis without even knowing the full implications of what it all means is only the beginning of the road for parents of unborn babies with the condition.

After the initial diagnoses we returned to the hospital every week for the next 16 weeks to monitor Tanisha`s heart rate.

From the early stages of my partners pregnancy her heart rate was a bit irregular, but you come to realise later on and just before delivery that this needs to be monitored in readiness of the delivery.

After leaving hospital for the first time we headed for the nearest library to research the condition for ourselves, unfortunately we only came across medical books that only described the condition in a way that only a doctor would understand.

We then used the internet as a tool to research the condition, but back in 2001 the result was more or less the same, so we seemed to have been left with more questions than answers.

It was not until we made our first appointment at Newcastle RVI to meet Professor Ravencroft who was to be the consultant that would deliver our baby did we get the answers we were looking for.

Dr Ravencroft explained the delivery procedure to us and how our baby would need an immediate operation to limit the extent of the Gastroschisis, this advice came 2 days before my partner was due to be admitted where she would undergo inducement at 38 weeks.

The evening before the planned delivery date we travelled by train the short distance from Sunderland to Newcastle Central Station where we took a slow walk while we discussed between us everything that was going to happen.

On admittance to the hospital we were given a private ward within the delivery suite and this is where the lack of sleep began.

At 5.30am the following morning my partner was given a pill to help induce the delivery, little were we to know that it would be a further 18 and a half hours later that Tanisha would arrive.

Those anxious hours were spent watching the t.v, reading papers and wandering aimlessly around the hospital grounds with the unknown in the back of our minds.

The contractions were still too far apart and dilation was not at the right level for delivery so a further pill to help was given.

Our consultant, his nurses and other delivery staff were waiting on standby ready for the moment which did not arrive until 11.55pm at which point what seemed like an army came rushing into the delivery ward pushing an incubater whereupon Tanisha was immediately put on oxygen and after all of her signs were checked she was passed back to her mother for not more than a few minutes before she was rushed to the Special Baby Care Unit to undergo her treatment.

For the next hour or so I spent a small fortune using the public payphones telling family and friends that our daughter had arrived and trying to reasure them that everything was ok, while not knowing exactly what was going on myself.

We had already been awake for more than 36 hours so it was hardly suprising that we dropped off for what turned out to be not more than an hour at which point our midwife woke us to tell us tat we could go and see Tanisha now in the baby ICU.

We had already visited the unit on our initial consultation with Professor Ravencroft who introduced us to the staff as we warily looked around at the incubaters and machinery and listened to the beeps of monitors and other equipment.

When we arrived in the baby ICU to meet our daughter confronted with what seemed like far too many tubes and wires I was again full of questions for the nurses there, I am more than sure thay would have answered the same questions a hundred times before, but for me I had to understand how each and every monitor and tube performed.

One of the hardest things to control is your babies body heat and Tanisha was having difficulty with hers but thanks to the constant nursing care given to our daughter during her thankfully brief stay in the ICU she got better quicker than most babies with Gastroschisis can expect.

When the time came to leave the ICU to move to a less dependant ward we could only thank ourselves very lucky, especially with everything that was going on around us. We did unfortunately experience the loss of other babies and children around us at the time and we can only thank the grace of God for our fate.

16 more days were to pass before Tanisha was allowed to be discharged but those early days within that ward were not as easy as they might first sound.

The PN line was the most harrowing experience during our stay. Initially we had to sign a release form because of the risks that go with such a delicate procedure, this was no easy task.

There were not too many options open to us, the form was signed and again Tanisha underwent her next procedure. The long line was to be inserted into one of her arms but after my phone calls to the operating theatre i was told that the first attempt had failed, then they tried her other arm without success, then one leg, then the other every time her veins would collapse.

Eventually the Long Line was inserted into her head leading up to a short distance from her heart, now she could start receiving the essential vitamins and minerals to keep her going until she could receive her first feed.

Tanishas first milk was going to be from her mother, who for the first time had to express her milk using a pump, this was not to her liking despite the advice given by the nurses that this would help. Tanisha then went on to 5ml of formula milk every 4hrs, this was the beginning of the process of persuading the bowels to work.

Waiting for that very first bowel movement at the same time as waiting for the colour of the contents from the naso-gastric tube to change was not the fastest process.

Sooner or later it would happen though and that day did come, you knew from all the questions you were asking doctors and nurses at the time that the poo was the milestone you were aiming towards before the next milestone of taking your baby home was to arrive.

We had completely disregarded sleep while we attempted to rest on the Z bed within the same room as Tanisha, but to this day we were very thankful we never left her side save the od meal of our own, even then we would sit in the hospital cafeteria filled with guilt that we could actually eat while she was not managing more than 15ml of formula every 2 hours or so.

Christmas day came and went, this was no time for celebrations, we were still struggling with the fact that we could not carry our baby more than 3 feet away from her cot with the amount of wires still appearing from what seemed like a million angles.

We had our visitors of family and friends with plenty of get well cards, we were thankful for the visits it stopped us from going insane.

The big day arrived when my partner was told that Tanisha could go home, I was returning from one of my brief outings to the news, which I immediately disbelieved because of my naturally pesimistic view that we were going to be there for months.

It was actually true, all we had to wait for was a doctor to remove the Long Line and we could go, I immediately made arrangements for a lift home and waited in anticipation for the line to be removed so that we could put the new dress we had bought on her and take her out of the hospital like so many other parents had done while I was grabbing a bit of fresh air, at the same time wishing that was us taking our baby home.

That time had arrived Tanisha was coming home.

Lilypie 6th to 18th Ticker

Update: 2/4/2012. Tanisha is doing fine and just started her own website: Tanisha Ellie

6 thoughts on “Tanisha`s Story

  1. thank you for youe message. i just read Tanisha’s story. it sounds so similar to mine!!! my girls are the same…running around, taking over the world!! i will be bringing steph to the library to see this website in the school holidays at the end of may. i unfortunately do not have the internet at home which is why i havent added any photos of steph yet!!! i am on facebook, sherry sleney…which has some photos. have a fab weekend.

  2. Nice story, sounds a bit like mine! I would have liked to come accross it before I delivered my baby in August 2009. But your site was very helpful to us with all the infos and stories. Must have been horrifiing not to know exactly what was going on until the last minute or so… I am glad that I was able to get a lot of infos from the doctors only a week (which still seemed to long) after the gastroschisis was diagnosed.
    Thanks again for having the idea and the patience of running this site!

  3. @Toby, Congratulations on the birth of your daughter Emie and thank you for the kind words about our site. It belongs to all of us, you included! A place to share our experiences for the benfit of others. Thanks for stopping by and by all means pass the site on to the ICU in Pretoria, although we do not have in depth medical info on the site, the nursing staff may benefit from reading other parents and those that have grown up with the condition.

    1. We negotiated with the nursing staff before leaving that we would leave some information regarding forums, websites and fellow gastroschisis families to be handed out to new and existing gastroschisis families that may also be looking for support. And I agree that the nursing staff may also benifit from reading the stories of families that are living with gastroschisis.

  4. I love reading your story as well as others. I am a Rn worked in nicu’s for 20plus yrs. Also a mother of 2 children now adults. Both are kids born with gastroschisis. In 1981 and 1985. Both had different courses in treatments. My daughter now 30 and recently preg. Had a difficult birth and extensive hosp stay. Also has had 3 reconstuctions. She has had a normal life with med issues throughout but has done well. With some hiccups along the way. Considering here large deffect at birth and a 3 month hosp. Stay. She recently married and is currently preg. And eagerly but very nervous as am I. Counting the wks and days till she can have first ultrasound in oct. And prenatal testing. I am nervous for her even though all her female parts have been normal. She has a hip to hip scar from previous reconstructive surgeries. I am nervous about her stretching and her scar. I started out on school when I was preg for her in 1982. When I delivered her I had just started a job as a new RN. I delivered her 7wks early. She had a rough time, but came home 8 wks later. I being a Rn did bring her home and needed to do a lot of care another person would have needed a Rn visit. I wanted her home so I convinced the mds to send her home early. This was indeed a challenge. I was so upset over not having a “normal delivery”, I was depressed and no one to talk with. So I am so happy that sites like this exist. I decided to look up my questions. I/we struggled to deal with a sick baby needing more care than a child without this. We did. I then became preg in 1985 for #2 my son his labor and delivery was better managed, as his gastroschisis was found on u/s. He was followed and we delivered via c-section at 37wks. And as result his course was better. He didnt have hisb intestines pulled on via vag delivery as my daughter had. He had some minor complications but his course was better. He did better due to his excellent prenatal and perinatal care. I was told after my daughter birth that this b defect was not genetic and I did have genetic workup with both. I, went to work in my first NIcu 3 months after my daughter came home. I read and learned as much as I could regarding abd. Wall defect s andb really it seams t o be more prevelent today than it was in 1980’s. I am not working in the area now. But I loved what I did and spent free time teaching care of children with this as well as other abd.Wall defects. I will share my entire story once I receive as password. But I was up just thinking about my kids courses and the fact that there’s so many questions unanswered. I want to hear from other women who were born with gastroschisis and have delivered children. I am scared for my daughter, even though i know it is not genetic. I worry! Please anyone who has delivered a childvi want to hear Your story. I am looking to start doing more research. But, I realized that there must be others that need to tell their stories. And I today may yrs later realize that if I had did this research that my adult kids would have and still probably would benefit from speaking to others who are living with ongoing medical and emotional pain. That talking to others may have helped them, me and others with the same problems. That a supportive person who has the same problems are a great asset. Please share your story, as we as people need others, who have been through this can HELP. Thanks, I look forward to any comments and plan to share this with both my adult kids. I don’t know why I never attempted to look this up. My daughters preg. Is why I started to look!!! Are there any support groups anyone knows of? We are looking forva high risk ob in our location, as I believe for her best care she needs a high risk ob. Thanks

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